Thursday, December 20, 2012

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.

Thursday, December 13, 2012

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.

Tuesday, December 11, 2012

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


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



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)


Friday, December 7, 2012

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.

Tuesday, December 4, 2012

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.

Monday, November 26, 2012

Fuming again

We’ve hit a bit of a snag in the charity concert we are organizing for FAFASD (Families Affected by Fetal Alcohol Spectrum Disorders) and I am royally pissed off about it.  FAFASD is the brilliant brain child of a virtual friend Adrienne.  She envisions a group that would provide training and support to families helping them help their FASD affected child (or adult) succeed.  It’s long been known that the number one success factor for people with FASD is a family, caregiver, or support system that is knowledgeable about the condition and their needs.  Great cause, right?  Who could object?
Back to my snag.  We’ve had some trouble with the school district about using the high school performing arts center as a venue.  As far as snags go it’s not catastrophic.  We will still do the event, we may be delayed and certainly are inconvenienced but it’s not like losing the main act or something.  So it’s not the fact that we have a snag that pisses me off.  I mean who could organize a large event and not expect a few of them.   (Granted I am kind of a control freak and fairly anal about making and sticking to a plan but even I know this kind of thing comes up.  That’s why you have contingency plans.  So you can just regroup, adjust to plan B and move on.  Which is what we will do.)
What pisses me off is WHY we are having trouble with using the school’s venue.  I know, I know, me having an issue with my local school district, hard to believe isn’t it?  We had a date, agreed to by the school, and had confirmed with our performers and then out of nowhere we were told that we could not have the performing arts center without paying a ridiculous fee.  Ridiculous enough that it might make the whole event unable to bring in any proceeds for the charity and one we know is not charged to others who have done the same sort of event.  (I know this without doubt because I was part of organizing those events too – it’s where I got the idea from.)  When asked why the sudden change we were told – and oh this REALLY frosts my cookies- “Well your son is not the only child in this area with problems, there are lots of others with needs.”    What the hell!?!
First of all, MY SON won’t benefit from this in any particular way.  The idea is to raise funds to train parents who don’t know how to cope with FASD.  I’ve done a mighty fine job seeking that info out for myself already, thank you very much.  At some point if we are able to organize a camp for kids with FASD I expect my son will attend at the same cost as any other child and might get some peripheral benefit that way, but for the moment all he is getting out of it is a somewhat distracted and busy mom.
More importantly, no kidding there are other kids than mine with needs, DUH that is what this is all about.  I know I’ve gone over statistics before but forgive me for going there again.  By the most conservative CDC estimates there are 40,000 children with FASD born A YEAR.  So let’s define children as anyone under 18.  That says there are almost three quarters of a million children with FASD in our country.   And if you want to look at adults suffering (and FASD is not curable – it NEVER goes away).  There’s another 2 million people.  There are more children right here in this school district  with FASD whether they want to acknowledge it or not.  FASD affects more people than, Downs Syndrome, Spina Bifida and Autism COMBINED.  I didn’t see the school having any issues with the program for national Autism week. 
I firmly believe this is discrimination.  I don’t know that it is intentional but I do know people don’t want to talk about FASD.  They don’t want to think about it and they certainly don’t want to address it.  No one wants to think about how their wife, sister, daughter may have done permanent brain damage to their child, grandchild, niece or nephew.    That doesn’t happen to nice normal middle class people.  Only degenerates, alcoholics, and druggies hurt their children that way.  Guess what people, one drink could be too much for some women.  How much is too much depends on too many other factors to ever give a safe threshold.  If your tolerance is low, if you have a cold or infection temporarily impacting your liver’s ability to filter the alcohol, if you are genetically predisposed to alcohol sensitivity, if you have not eaten well on the day you drink, ALL can impact how much of the alcohol passes through to your child.
And let’s be clear on this one too - there is NO safe time frame either.  Long before most women even know they are pregnant critical parts of a baby’s brain have started to form.  What if a theoretical nice normal middle class woman, who has no idea she is pregnant, goes out to a bachelorette party for her best friend.   Would anyone blame her for having a margarita (or even three too many)?  As long as she didn’t drive herself home no one would even blink.  Or the women told by well-meaning but misinformed friends, relatives and even doctors that a few drinks here or there won’t cause any harm.  When their children are born looking and behaving perfect in every way months later would anyone even stop to wonder about if they drank, how much, or when?  No.  Not with that healthy happy baby right there.  Unfortunately, the more subtle forms of damage from FASD won’t be seen in those children until they are elementary or even middle school age.  Then, when they have troublesome “behaviors” no one will think, “Hey this may be a symptom of brain damage caused by fetal alcohol exposure.”  Oh no.  They will think “Oh my, that child has ADHD” and put them on medication designed for that specific issue.  Sorry, FASD cannot be solved with Ritalin.  Or they will say – “That child has bad parents.  Nothing wrong with them that some discipline won’t cure.”  Except discipline can’t make a blind child see, or a deaf child hear, and it can’t heal brain damage.  
My son is going to be fine.  He has, I guess you could say, mid-range impairment on the spectrum.  It is enough to notice, enough to get attention and help, AND he has parents knowledgeable about his disability.  Children at the mid to low functioning range of the Fetal Alcohol Spectrum actually tend to do better than children on the higher end in the long run.   It’s the children of our theoretical nice middle class women, who did nothing intentionally wrong, that will never get a diagnosis or the help they need.  Their parents will be clueless as to why everything they try just doesn’t work, especially if it works with their other children.  Those children will grow up in a word that is too fast, too loud, and too damn ignorant to ever get them the help they need.  Looking at the statistics, they will end up frustrated and depressed.  43% 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 unless they are provided with appropriate supports, increasing their risk for homelessness, depression, substance abuse, etc. It becomes a vicious circle and it doesn’t have to be that way.  With support most people with FASD can learn and they can be gainfully employed.  Except, who’s going to identify what they need?  Who’s going to help them get it? 
And that is what pisses me off most about this snag, those children (who are not my son) with special needs that are not and will not be helped because no one wants to talk about FASD.

Wednesday, November 21, 2012

Overthinking?

I have to travel for business next week.  I will be gone for a full 5 days and nights.  So far I have 6 pages of notes for my husband and mother in law who will be watching the children while I am gone. 

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 tired!!

Sorry guys - its been a busy few days here and today is just not going to be the day I catch up.  Little Man had a flare up of the infection around his eye that is a lingering issue since he broke his nose early this year.  We went to the emergency room last night to go through the disgusting process of draining it off.  Normally that could be done at the Dr's office but it built up so fast we were afraid to let it go overnight.  We definitely don't need a rupture of the skin which just allows more infection. 

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

A Sneek Peek

I don't post photos of my kids on here.  Its one thing for me to let all my stuff hang out there but I feel like I ought to maintain at least a little anonymity since so much of what I talk about is my kids business as well as mine and they are not making that choice.  If you check out this video on FASD you will see my Little Man though.  I'm just not saying which one he is. 

http://www.youtube.com/watch?feature=player_embedded&v=I2cmss3tZ1s

Friday, November 2, 2012

Incredible People – part one

You know I spend a lot of time complaining about how there are so many people that just don’t understand FASD and or just don’t care that I thought, now in November, maybe I should make a real effort to highlight some of the really superb, knowledgeable, caring people that are out there that I am so thankful to “know”*.   I’m going to start with one I have mentioned before, Diane Malbin. 
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.
Diane is also a clinical social worker, program developer, and consultant who provides information and services for individuals, families, and agencies dealing with FASD.  She has written two books, Trying Differently Rather than Harder  and Fetal Alcohol / Neurobehavioral Conditions: Understanding and Application of a Brain-Based Approach - A Collection of Information for Parents and Professionals.  I own two copies of the first book.  I use one to loan to teachers, doctors, therapists and others that work with my son.  The other I reread myself regularly as I mentioned here because it is just that good.  I am eagerly awaiting the two copies of the second book which I currently have on order.  I fully expect it to be just as good.
I first had the opportunity to hear Diane speak as part of Jeff Nobel’s Caregiver Kickstart program.   Her approach to linking the specific brain dysfunctions suffered by those with FASD to the behaviors those dysfunctions produce made automatic sense to me.  It was one of those “A-Ha! Well Duh!” moments you have when presented with an idea that is brilliant in its simplicity.  Like a lot of things that are brilliantly simple – applying the neurobehavioral paradigm Diane proposes is not as easy as it is seems.  The change in thinking can be very hard to do, which is why I am so absolutely thrilled to have the opportunity to meet Diane and speak with her in person later this month!!!
This is what I think makes Diane such an amazing and outstanding person.  A stranger (me) contacts her out of the blue and asks for her time and her answer is, “of course”.  You’ll probably see me writing more posts about Diane’s neurobehavioral approach as I work through some of the material she sent me to look at in advance of our meeting.  I think my understanding and ability to talk about and really apply it will be much enhanced by that meeting.  But that doesn’t change my earlier recommendation – if you deal with someone who has FASD – go get a copy of her books.  Heck, get two of each – they are more than worth the price. 

*For most that means “know” in the virtual sense.  I’m not a big web surfer but for finding information and support on FASD the internet is a powerful tool.

Tuesday, October 30, 2012

How Alcohol Effects Neural Development - continued

I usually do a little more than just the first two visuals and associated points - if I can keep them focused.  Specifically, 


A lot of people seem set against accepting FASD.  It really bewilders me.  I mean some of them have personal reasons I'm sure - not wanting to accept that they or someone they know may have been impacted by prenatal exposure, their own or someone else's struggles with alcohol addiction, but some just seem set against it for no reason at all.  Why is it so hard for some people to accept that FASD does exist?  Theres a question of the week (month, year, life) for you.  Does anyone else see this persistent denial?  Do you understand it?  If so, can you explain it to me?

How Alcohol Effects Neural Development

I expect most people who find there way here already know all this stuff but I still have some people I meet who don't so this is how I like to describe it - with some simple visuals (usually sketched onto what ever is handy) and reference to a few well known authorities since my word from the caregiver trenches  is never good enough. 


It has a lot more impact in person I think.  People seem to have a visceral reaction to you picking a random cell and beginning to erase all the connections and following development.  There are still lots of objectors.  I'm still working on how I counter all the crap and finally get through to them.  I suppose you will never convince everyone but i believe the first step to helping people who suffer from FASD is educating all those who don't know about it / don't believe its real.

Monday, October 29, 2012

FASD and Sleep

That we are not much sicker and much madder than we are is due exclusively to that most blessed and blessing of all natural graces, sleep.   ~ Aldous Huxley
For those suffering from FASD severe lifelong sleep troubles are often associated with their condition.   We have very definitely experienced this with Little Man.  He has exhibited all of the classic sleep issues of an individual with FASD; delayed sleep onset, frequent waking, night terrors, and early waking.   There have been times where I went days with no more than 4 hours of sleep.  This is unbelievably disruptive for a caregiver / parent but I also think it is horribly detrimental to the child.
 It’s well documented in the medical community that inconsistent or inadequate sleep creates health issues, behavior issues, and problems with cognitive function.  The most typical behavioral and cognitive symptoms read almost like a list of FASD symptoms.  Behavior symptoms induced by sleep issues include hyperactivity, aggressiveness, inattentiveness, impulsivity, depression, and other mood disorders.    Cognitive symptoms include problems with verbal fluency, comprehension, abstract and deductive reasoning, planning, flexibility, inhibition, problem solving, attentiveness, vigilance, memory formation and motor skills.  I’m not by any means suggesting that sleep issues CAUSE the problems of FASD.  Alcohol exposure during neural development did that.  BUT I think it’s reasonable to say that sleep issues amplify these issues and may interfere with interventions aimed at improving them.  Given that, treating sleep disturbance in people with FASD should be, in my opinion, a major concern and focus of interventions aimed at improving their skills and quality of life. 
Unfortunately, there are not a lot of scientific studies backing up this theory.  Even worse, finding a doctor that specializes in diagnosis and treatment for FASD (there are criminally few of these folks) who also specialize in sleep disorders is nearly impossible.    There has been quite a bit of research showing that persistent sleep loss during critical developmental periods is especially harmful to healthy cognitive and motor development and that children subject to long term sleep loss may never reach their developmental potential.   It seems unnecessary to me to do specific studies confirming the same for children with FASD before simply working to improve their ability to sleep.  If it is critical to the development of a neuro typical child then it should be at least as important to one that is neuro compromised.   So in addition to educating more healthcare professionals about FASD – we need more to be aware of how to treat sleep issues. 
There’s precious little I can think of that I can do the help get that rolling.  But I’ve done a ton of my own research – on sleep disorders ( I suffer from insomnia myself) and FASD and interventions for both so here’s what we do for Little Man (with some theory / reasons for why / how we came up with this routine.) 

We use liquid melatonin 30 min before bed time.    Melatonin is the hormone in the body that directly regulates circadian rhythm – or the body’s sleep wake cycles.  The circadian rhythms, including sleep and pineal melatonin production, are modulated by the hypothalamus - an area of the brain frequently impacted in FASD. The hypothalamus reacts to input of light/darkness and other environmental information from the cerebral cortex (also often impaired by FASD) which then influences the timing, duration, and quality of sleep. Given that the areas of the brain regulating production of melatonin and the signals used to trigger it are often impacted – supplementing seems like an obvious tactic to me.  And for us – it works.  After adding this to Little Man’s nightly routine his “sleep onset” time went from anywhere from 1 to 2 hours to about 15 minutes.
Little Man sleeps under a weighted blanket with a very soft foam mattress pad on his bed.  The patterns of damage in the brain of a person with FASD are highly individual but tend to be widespread.  The ability to regulate sensation is almost always compromised.  Weighted item therapy has a long history of helping calm sensory dysregulation.  Plus – again – it works for us.  After adding this to Little Man’s nightly routine his “night time arousals” went from 3-4 a night to once or twice a week.  This was recommended to us by a young man who has FASD during one of the sessions we attended in Jeff Noble's Caregiver Kickstart program.
We have a set bed time routine of Bath, story time, singing and snuggles in the rocker from which we do not deviate – ever!  General good sleep hygiene suggests you should have a consistent bed time routine that consists of calming activities.  I know this is helpful to me with my insomnia.  People with FASD generally do better in any activity that is structured and consistent and often have problems with deviations from routine so this just makes good sense.  The Rocking chair portion also addresses Little Man’s vestibular processing needs.
 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.
Unfortunately what works specifically for my Little Man may not work for every person with FASD.  Hopefully it gives you some ideas though.  Other things I have seen, heard, or read about you may want to consider when looking to help your own FASD’er are:
Bedrooms should only be used for sleep - not play or punishment
No screen time for some set time period before bed
No horseplay or physical activity close to bed time especially running or spinning
More or less food before bed (low blood sugar from not eating or conversely reflux from eating may be a  problem)
Remove allergens from the room – dust, carpets, animals, use hypoallergenic covers for mattress / pillows
Deep breathing, Yoga, Meditation
Massage, Acupressure
Brushing / Joint compression protocol
Telling / reading Social Stories about sleep
Occupational Therapy for sensory integration during the day
Seek out a sleep study clinic to see if there is another underlying medical issue or advice on sleep medications
Pay attention to all sensory stimuli that may be impacting them and try to adjust that input according to their needs:
Sounds (use white noise machine)
Smells (aromatherapy can help)
Temperature
Lighting level (more or less depending on their issues)
Clean orderly soothing room – minimal stimuli – little furniture, soothing wall color, no hangings few toys etc.
Texture of bedding or night clothes

Here’s a list of my research sources on this topic to help you with our own detective work.  I wish you all good luck and Sweet Dreams!!
Academic Editor: Myron Genel  Copyright © 2010 James E. Jan et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Thursday, October 25, 2012

Update

Sorry - I have been neglectful.  Life has been piling up as it has a way of doing and Mama is sick.  I swear I have NO immune system at all any more.  So I have been struggling to just keep up with everything going on and not done much in the way of posting. 

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

What can you do?

Little Man had surgery today.  He broke his nose this spring and as a side issue to that he developed a cyst between the bridge of his nose and his left eye.  After multiple rounds of antibiotics and draining the fluid from it by needle once, the doctor finally decided the only way to fix the issue was to put him under general anesthesia and excise the cyst. 

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. 

Unfortunately - in addition to the delightful start to the process - Little Man had a reaction to the anesthesia and stopped breathing during the surgery so they had to intubate him.  What was supposed to be a 30 minute procedure ended up taking an hour and a half in the procedure room itself and four hours in recovery.    Little Man appears fine now, other than a sore throat and some itchy stitches (and he would have had the stitches regardless).  Mama however is traumatized by guilt - for restraining him while he cried and begged me to help him and they gave him the gas that could have killed him, by the scar he is certain to have, and by his pretend play since we got home, where he holds down his screaming teddy bear and smothers it with a pillow.  So much of my parenting is second guessing.  Is it like that with neuro-typical children?  I don't have any so I just don't know.
What could I do though?  I could not leave the cyst unaddressed.  We had tried that for months and at one point it swelled so large that it was affecting his vision.  That is when they did the needle draining.  Maybe if we'd done this sooner he would not have the scar.  It would not have gone any easier but I didn't gain anything by waiting either.  I guess I could have let strangers restrain him.  But wouldn’t that just be sparing me – not him?  I guess I should have tried harder, more, longer to make sure his specialist understood how the process was going to effect him emotionally.  I get so tired though of educating sometimes - especially the doctors and educators. 

Tuesday, October 2, 2012

Reluctance by Robert Frost

Out through the fields and the woods
   And over the walls I have wended;
I have climbed the hills of view
   And looked at the world, and descended;
I have come by the highway home,
   And lo, it is ended.
The leaves are all dead on the ground,
   Save those that the oak is keeping
To ravel them one by one
   And let them go scraping and creeping
Out over the crusted snow,
   When others are sleeping.
And the dead leaves lie huddled and still,
   No longer blown hither and thither;
The last lone aster is gone;
   The flowers of the witch hazel wither;
The heart is still aching to seek,
   But the feet question ‘Whither?’
Ah, when to the heart of man
   Was it ever less than a treason
To go with the drift of things,
   To yield with a grace to reason,
And bow and accept the end
   Of a love or a season?
Happy Birthday Daddy.  I still miss you. 

Thursday, September 27, 2012

Mazel Tov

I need to start buying cigars.  Oh and call CNN.  Little Man is apparently pregnant.  He has been walking around for the last three days inviting everyone to feel the baby in his tummy.  I have no idea what had brought on this burst of fertility.  He does have 2 baby cousins but since they are 10 and 7 months old it seems a little late for that to be the driver.  I’m not aware of any other pregnant woman he may be seeing.  Since he seems to give birth on average twice a day I probably should also be stocking up on diapers and formula.  Unless he reverts to wanting me to breast feed all his babies.  When his cousins were first born that was his obsession.  He would walk up and shove stuffed animals down the front of my shirt because they were hungry.  As long as he doesn’t start that again I’m cool with all his offspring.  Hey – just think of the dependents I’ll have to claim on next year’s taxes!!


But seriously, the dysmaturity that comes along with FASD is not always a problem.  Sometimes, like Little Man’s latest pretend play, it is a delightfully funny surprise.  Sometimes it is piercingly sweet, like the way he still loves to rock and sing and cuddle every night before bed.  It can make my heart almost stutter in my chest when I hear him give a rolling belly laugh of the kind kids seem to lose somewhere between toddlerhood and school age.  And it swamps me in a tidal wave of love when he melts into my arms, tears clinging to his lashes, comforted just because Mama kissed it better.
I saw a rainbow on the way home from work the other night and it immediately brought to mind that trite old phrase – you can’t have rainbows without the rain.  As much as I hate the sticky sentimentality of clich├ęs, I have to admit there is some tiny grain of real truth stuck in all that syrup.  I may mourn what Little Man could have been without the prenatal alcohol exposure but I love who he is now and FASD is a part of him.  I would not wish the pain and problems he will experience from this disability on anyone but I wouldn't change him either.  I will just celebrate every sweet, wild, sensitive, restless, frustrating, amazing bit of him just like I drank in the shimmering beauty of those surprise colors.