The Heart in You is the Heart in Me

image by Olivia House Photography - found on Pinterest

I talk most about the impact of prenatal alcohol exposure (PAE) to the brain because that is what impacts my son’s daily life the most.  But alcohol exposure in utero can adversely impact any part of a developing fetus.  The impact is, as always, dose dependent, meaning the more alcohol the larger the potential impact.  What feels that impact, i.e. what part of the developing child is affected, depends in a large part on the timing of consumption and what is developing at that time.  Many people focus on the first trimester as the most critical time because the development of the fetus is most dramatic then but the truth is parts of a baby are developing the whole 9 months and while the most severe damage (including fetal death / miscarriage) is most likely in the first 3 months – some pretty rotten stuff can happen from alcohol exposure at any time during the pregnancy. 

One of the potential issues people seem unaware of is how PAE can affect the heart.  People with prenatal exposure are at risk for defects to the tricuspid and mitral valves leaving them either malformed, missing, or dangerously thinned (which then allows blood to flow backward into the atria); ventricular septal defects, commonly known as a “hole in the heart” between the left and right ventricles; and enlargement of the left ventricle, the primary pumping chamber in the heart.  Any of these issues, when serious enough, could cause the need for surgical correction.  All of them if present, even in a milder form, make the heart work harder and age faster than normal, leading to the increased risk of heart disease in general in the future.  the first sign of these sort of problems is usually a heart murmur found during an infant exam.

Development of the heart begins during the third week of pregnancy when most women are not even aware that they are pregnant.  Alcohol interferes with the migration and specialization of the cells forming the structure of the heart.  It’s worth noting that one study by Case Western University showed that a single binge drinking episode timed at the beginning point of the heart’s development was sufficient to produce dangerous impacts to the heart. Genetic background is of course an important factor in moderating alcohol's effects on the developing fetus. 

It is common for babies exposed in the womb to have a heart murmur that fades away by one year of age. Unfortunately because PAE has been found to reduce the ability of the heart to contract at the tissue level the risk of developing heart problems does not fade even if the murmur does.  Most parents, upon hearing that a heart murmur has “resolved” would consider that any danger of cardiac issues had past.  Little Man had such a murmur.  Its long since gone.  While I don’t talk about it often it is something that stays in my mind.  Because of his prenatal alcohol exposure his cardiac function is something we will have to worry over – and perhaps monitor - his whole life. 

I've been thinking about this more recently because I have been having some concerns about my own heart health.  Which, of course as any personal health issue does, leads me into worry about who will take care of my son someday (hopefully a long, long time from now) when I am not here to.  Today, I refuse to travel down that rabbit hole of fear though.  Instead, I'm going to remember what Little Man said to me the other day about hearts and family and love.  

"Love is when you feel warm and safe because you have your family in your heart." 

Yes baby.  Yes it is.  

A Picture is Worth a Thousand Words

I wish I could find time to write here more often.  I don't know how other special needs mom's manage to write daily. I am in awe of them.  I really am.  I was trying to figure out where my time keeps disappearing to and I decided to lay out Little Man's schedule of appointments, consultations, and therapies.  I finally gave up on doing it in just list format because I kept getting confused and missing things.  So here's my visual representation: items in Red are things that he does at least once a week (some like Speech and OT are everyday), Orange happen monthly or every other month, Yellow at least 2 times a year, and finally the White are one off activities.  (We usually end up with one of those a year.)

Image is a word web created by me

Because we live in the middle of nowhere most of these require at minimum a 20 minute drive - some as long as an hour.  It averages out to about 12 hours a week.  OK - feel less guilty about the lack of blog posts now.  I'm sure that those other special needs mommy bloggers are carrying loads just as large but you know what - this is crazy for anyone!!  We all need a nap!

It is not uncommon for a child with FASD to need care webs as complicated as this.  True we could crop some of the items - he does not have to go to Hippotherapy and Music therapy and Play therapy.  But many  children with FASD would have CPS appointments, and SSI, and other items to fill in.   We do things like that in part because Little Man is not able to participate in soccer, or cub scouts, or other typical after school activities.  We've tried and they just do not work for him.  He really enjoys his time with the play therapist, he loves the music and the riding.  They are his "extra curricular activities."   They also have the benefit of really helping him develop better sensory integration and social skills. So I'm not whining - or at least I'm not trying to.  It honestly did surprised me how much time it all takes added up.   Now if I put up a list of housework and errands I do - that would be whining!

Do You See What I See?

We went to the developmental ophthalmologist for the first time today. For those like me that didn't know the difference between a developmental ophthalmologist and a regular ophthalmologist, a developmental ophthalmologist is an eye doctor who has completed two to three years of post-graduate training and is credentialed as a Fellow in the College of Optometrists in Vision Development, or F.C.O.V.D.  

We made this appointment at the recommendation of his occupational therapist who mentioned that she had noted he has problems with eye tracking and with shifting vision from near to far.  Little Man already sees a regular ophthalmologist and wears glasses.  Since we (and Little Man's teachers) have seen the same problems we've mentioned his issues there but the Dr just assures us his proscription is correct, so we thought it would be a good idea to go ahead and get the developmental screening done.  He clearly has more going on than just visual acuity problems.

As expected Little Man showed signs of learning related vision problems in his screening.  If anyone is wondering if someone they know may be having problems, the symptoms of learning related vision problems include:

• Headaches while reading or writing

• Blurry vision when reading

• Difficulty smoothly reading across a line

• Skipping words or entire lines when reading

• Difficulty copying from the blackboard

• Avoiding reading and writing

• Poor reading comprehension

• Short attention span

• Moving one’s head excessively when reading

• Poor handwriting

• Burning, itching, or watery eyes

• Bumping into things

• Holding books too close or too far

• Squinting

• Difficulty recognizing faces

Little Man was diagnosed with Ocular Motility Dysfunction and Accommodative and Vergence Dysfunction, specifically. This is of course in addition to his overall sensory integration issues with coordinating visual input with spatial, auditory, motor, or tactile stimuli.  I can’t say we are surprised.  Issues with the formation of the visual system (and the ears although that is a whole other series of posts) is common with FASD.  Up to 90% of children with prenatal alcohol exposure show ocular manifestations (Strömland, 1985, 1987)

So now we are trying to find some way to fit regular follow up with another specialist and weekly vision therapy into a schedule already crammed with OT, PT, Speech Therapy and too many specialists to remember without “the list.”   I am never ever unwilling to do anything Little Man needs. I sure do wish there were more hours in a day though. Sigh.

9 Things I'd Like You to Know (Give or take a few - ok, mostly give)

My son is 7 years old. He’s a cheerful, musical, curious, animal / outdoor / reckless crazy stunt - loving, whirlwind. He also has Fetal Alcohol Spectrum Disorder (FASD) — one of the 3 out of 50 kids in the USA who are estimated to be affected.*

Prenatal exposure to alcohol changes the structural development of the brain.  It can affect other parts of the body too but the brain sees the most impact.  Here’s the biggest thing I want to tell you about my son.  He is neither damaged nor broken — he’s an example of human variation.  All kinds of genetic and environmental influences cause variation in each and every human being born.  Just because we know what caused my son’s brain differences doesn’t make him less valuable and that’s what damaged means you know, harmed or injured resulting in loss of value.  So no, he is not brain damaged.  He and his brain are not less valuable.   His brain functions – just differently than typical.  He is neurodiverse.  (Or as my teenage daughter prefers – Neuro Divergent )

I have to admit that at first I let FASD’s differences terrify me: I read the grim statistics published about life outcomes for people affected and I was almost paralyzed with fear.  But slowly I am coming to realize – my job as Little Man’s mother – is not to layer him in bubble wrap and tuck him away from the world to keep him safe.  A life that limited is not really much of a life after all.  My son is not “perfect.”  Neither is the world.  I’d argue that “perfect” does not exist other than a concept.  I want my son to live a life rich in opportunity and experiences, to know how to live as his imperfect self in this imperfect world and still appreciate its beauty.  So my job is to model for him how to do that, which means I cannot live in fear and I cannot isolate him.  I have to seek out the beauty in his difference and continuously expand his opportunities for connection.

Part of that is not only appreciating Little Man for exactly who he is but helping others understand and appreciate him as well.  This is an ongoing effort partially because those grim statistics that frightened me so are the majority of what everyone else knows about FASD.  The world’s reaction to difference or divergence of any kind is one of those world imperfections.  Myths, misinformation, misunderstandings, fear and a pervasive culture of conformity are the first reaction to divergence and have to be faced down over and over.

We need better awareness about FASD and how it impacts those affected. We need to train doctors, parents, children, teachers and community members to be understanding and supportive because that is what will reverse those grim life outcome statistics.  People with FASD do not become depressed, suicidal, and homeless or turn to drugs, alcohol and crime because they have FASD.  It happens because they are misunderstood, frustrated, and ostracized.  So here are some specific things I’d like people to know about my Little Man, besides the fact that I adore him so completely. I like to think someday he will be able to share these things for himself with those he wants a connection to but people affected by FASD often have uneven skill development.  Little Man’s communications skills may eventually be up to the task, but his self-observation skills may not be, so it’s my hope that you will consider these 9 points —from his mom – to help make real connections to the world more possible for him: 

1.  Slower processing does not mean non-intelligent. Little Man hears and absorbs almost everything people say to him, and in front of him, whether or not he responds in a way that makes sense to you. Even when he doesn't understand he stores it away to come back to later.  He often repeats bits of conversation word for word to me at a later point and asks for clarification.  So, please, do not talk about him or things that are not appropriate for him to hear in front of him as though he’s not even there, its a bad idea.  He’ll remember, he won’t like or trust you, and if you've said something really inappropriate I won't any more either.  

2.  Little Man appreciates and thrives on your patience, because, as I’ve said, it usually takes him a few beats longer to process spoken words. So give him a moment, once you’ve said something to him. Don’t repeat (with or without) using different language or shout.  You are just piling on more for him to process when you do that.  He hears you.  Give him some time to respond.  (And maybe slow down your rate of speech too if he seems to be struggling.)

3.   Little Man does best with concrete subjects and language.  Abstract topics like money and time are a struggle for him.  So are figures of speech.  You can help him understand time by talking about concrete events.  “We will go after lunch” means more to him than “We will go at 1:00”.  Also, if you mean “Let’s go now” then say that.  “Time to hit the road” is just going to confuse him. 

4. Little Man craves sensory input. Sometimes he really needs his weighted blanket on his lap or to push, pull, or carry heavy objects.  It helps him feel grounded and relaxed.  He also needs to touch everything, to bounce, to chill out in a swing or sometimes to just run & spin in circles. It all depends on if his system needs speeding up or calming down.  He can’t do that internally without the external input.  Most people with FASD have some sensory differences.  They can be over or under responsive.  It helps tremendously when you can be accommodating of their needs. 

5. For Little Man repetitive sounds or “stimming” are another form of sensory seeking / self-soothing. So, if he’s repeating the same word or sound over and over, tapping on the desk, or kicking at the chair, please let him be if possible.  He’s not doing it to be annoying, but because he needs it in some way.  (It is important you respect the stims– it’s usually what is helping him hold off a meltdown. I know that it is not always possible to ignore stimming in every setting.  In those cases please work with him on trying to find other less intrusive ways to get what he needs.)

6. Eye contact is not always a priority for Little Man. Some days you can have his attention, or his eye contact, but not both— managing the dual focus can be overwhelming for him if there is a lot of other stimuli going on or if he is trying to process something complex or if he’s just having a bad day. Strong emotion makes eye contact especially hard for him.  He will give you eye contact when he can - on his own terms.  Please don’t demand or force it.  shouting :look at me when I'm talking to you" is never going to help.  (Remember Autistic people also find direct eye contact discomfiting, and by the way, it is even considered disrespectful in many parts of the world.)

7.  Little Man is a bottomless pit.  He eats almost as much as a grown man most days.  His metabolism just runs super-fast probably because he is such a perpetual motion machine.  I know he looks like he is skin and bones but we do not starve him, I promise.  If he’s out of sorts with you – he may very well be hungry.  A snack might be just the thing to restore his normally sunny disposition.

8.    No offense, but in spite of how much Little Man loves having friends he is not just waiting around for neurotypical people to be friends with him. He is extremely imaginative and can entertain himself very easily. He is perfectly content to live in his own imagination.   If you’re interesting though, if you genuinely like him, and if you take the time to really talk to him, he will want to be your friend.  He is very openhearted.  He just likes people and most of the time people really like him, even people who don't think they will at first.  He is a good friend to have, caring, loyal and generous.  If you are patronizing to him or not being genuine he will know it.

9. Little Man is happy. We don’t hear this enough about people with FASD, since messages about Fetal Alcohol tend to center on prevention and play up the problems and negative outcomes. It is true Little Man has his struggles and frustrations.  What person on earth does not?  They do not define him though, any more than yours define who you are. Like I said at the beginning, children and adults with FASD are not depressed or defiant or aggressive because of FASD.  They become those things because of chronic frustration caused by living without support and understanding of their differences.  Little Man’s happiness stems from feeling loved, and accepted, and supported just as he is. You can help keep him that way by understanding and accommodating him as well.

Of course people with FASD are just that, people, each one similar in some ways and individual in others.  I’ve given you some specifics about Little Man.  Others affected will have some of the same characteristics, and some that are specific to them.  You can help them all however, as well as people who are different in other ways (ASD, ADD, OCD, etc.) by just being open minded about neurological diversity. 

* Estimates for FASD prevalence vary widely – being as low as 1% and as high as 12.  Most people believe the higher numbers are more accurate but to be conservative I’ve gone with the middle ground.

Going For It

I've been wrangling a post around and around in my head practically since I (re)started blogging.  I have not been able to get it quite right and so I keep churning and not blogging.  It finally came to me (yes I am slow sometimes) that it is more important to be talking about this than it is to have the single perfect post on it.  (if such a thing were even possible) So here are my current thoughts – miss mashed as they are – to get started.  I expect I’ll revisit it a lot.

We as a society appear really, even monumentally, bad at respecting neuro cognitive diversity to me.  (I’m not even going to get into diversity in general – my brain totally spins out of control if I try to tackle something that large).  This is not a holier-than-thou rant.  I include myself in that assessment completely.  I've already called myself out on it publicly here once but I catch myself in it constantly.

One of the examples I am mulling most recently is The Arc campaign “A Life Like Yours.”  I need to say first that I applaud their intent to make the public aware of the lack of basic rights for those that are "different" and I totally support the campaign for additional SS waivers and more services / supports to make non institutional living more accessible.  What troubles me is subtle.  Both the assumption that all people want "A Life Like Yours" and the suggestion that to be equal the lives of those who are different need to be the same as everyone else's assume the superiority of the "normal".    i.e. the slogan for the campaign both separates us into two groups "us" and "them" and posits that “their” life both should look like “ours”.   I'm left wondering but what if they do not want "A Life Like Yours"?

Beyond the catch phrase the Arc does say “This is a human rights issue that unites us as one. It far surpasses color, race, religion or even social status. "  I love that part.  When I asked the adult FASD community what we should "call them"  I met with ... crickets.  (As I should have) And then one kind soul responded saying "I call us people."  I was humbled.  He was right.  what we may see as their differences ARE NORMAL for them.  So I love that this is being addressed as a human rights issue - not a "disability issue."  But I wish there were away to discuss this and promote the need for equality of opportunity, and the equal value of all persons, without the implied or outright stated message that everyone’s life must look the same to be of equal value/validity.  

I believe all people matter.  I passionately believe that this is a fundamental issue for our country. (and the world but hell who am I to be trying to take on the world)   “We hold these truths to be self-evident, that all men are created equal…”  Our very foundations as a nation are based on just this issue and yes civil rights groups are actively pursuing the rights of the neuro cognitively diverse.  However, we all continue to define people who are different as people who are dis-abled.  Disabled fundamentally means “limited in movements, senses, or activities in some manner” and this definition does not include limited by WHAT.  Looking at that – aren't we all disabled at some time for various reasons?  Disabled does not have to imply deficient or not having / being enough.  And yet, if you were to apply the word “disabled” to someone who does not consider themselves to be, they would protest, probably quite strenuously.  Disabled does not have to imply deficient or not having / being enough but in practice it almost always does. 

This is important to me personally  because my child and my brother are going to face discrimination due to their FASD all their lives.  With where they fall on the spectrum they will be judged both "not normal"  and sadly also "not disabled enough."  With an estimated 15% of the population of the US having some sort of disability the chances are good that most people know or love someone with some kind of "disability".  Even those that do know or love some one affected personally should care.  As Martin Niemoller said:

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn't a Jew.

When they came for me,
there was no one left to speak out.

Equal rights for all matters.  I will be honest - I don’t know how we change the subtle (and not so subtle)  pervasive denigration of neuro cognitive difference.  I wish I had a solution I could trumpet from on high. (I do so love the moral high ground - its a failing of mine.)  I still wrestle daily with my own personal bias, trying to see the world from my son's  and brother's view and then struggling to accept that as every bit as valid as mine.  Some times I succeed sometimes I fail.  One thing I am sure of  if we are not talking about this topic, examining it, working on it,  then there’s no way we will change it.  

Regrouping

I have been talking with some other folks parenting people with FASD and, well, sometimes I think that I think too small.  This situation with the FASD Center of Excellence  could end up being a benefit to us and our loved ones in the long run.  I'm still fired up about the funding being cut to the CoE but perhaps, as part of the discussion of how that kind of got sneaked in with no discussion or debate, we can also start some discussion of how the funds have been used in the past and how they should be used going forward.

The SAMHSA FASD Center for Excellence was launched in 2001. Congress authorized the it in Section 519D of the Children's Health Act of 2000, which included six mandates).

The stated mission of the FASD Center for Excellence is to facilitate the development and improvement of behavioral health prevention and treatment systems in the United States by providing national leadership and facilitating collaboration in the field and it lists three goals:

1. Reduce the number of infants born prenatally exposed to alcohol.
2. Increase functioning of persons who have an FASD.
3. Improve quality of life for individuals and families affected by FASD.

 For the most part almost all funds spent to this point have been aimed at prevention only.  “Treatment” has been focused on treatment of women with substance abuse problems which is in essence – more prevention.  I don't disagree that keeping more people from having the struggles and pain our loved ones suffer is important.  But there is almost no spending on research for how to help and support those already affected or on research into how to do that most effectively.  Surely that deserves effort?  So – in addition to outrage at the defunding of the center -  Maybe we should be shifting the conversation from "how dare you decrease what was already insufficient?"  to a different conversation altogether, something more like – "put back the money and see that it goes into the other 2/3rds of your goals!"

So I've been trying to figure out what that form letter looks like.  I have not gotten far yet but the idea is more persistent than an earworm noodling around and around in my head.  Restore funding remains an important part of the message - but we should be making our voices heard loud and clear on what to do with that funding.  Awareness and education for people working with those affected and research on effective supports / therapies across the lifespan as well as providing help and support have always been the intent of the Center.  They need to become the practice as well, because in the end both of those efforts will also end up having preventative effects.

It is hard to take this on sometimes - the problem is just so big - which I suppose is another way of saying I'm thinking too small.  I LIKE small actionable targets.  I like things that make me feel like I have gotten something done, things I can check off as complete.  I guess I have to keep working on really embracing the messy, not ever "complete" part of this struggle.  

Fortunately another thing I've never done well is give in, or give up, so you can bet I’ll keep trying.

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)

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.

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

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.

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!!

Sleep Health Issues for Children with FASD: Clinical Considerations/

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.

Sensory processing and sleep challenges in children with fetal alcohol spectrum disorder

Losing My Mind (A mom’s blog)

Sleep problems in FASD: A focus on solutions

Sleep and sensory characteristics in young children with fetal alcohol spectrum disorder.