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


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.

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.