What should I have said?

*** Edited to include what I cannot believe I forgot in question # 3

I was asked some interview questions recently by a grad student who will be presenting research on FASD and wanted some personal comments from a caregiver.  The questions looked really simple on paper but writing the replies to them was horribly hard, harder than I ever imagined it would be when I agreed to do it.  I'm still not happy with what I finally came up with.  I'm including the questions and my answers below.  I really want to know what you guys think I should have said - what do we need to get out there?

1.     What is would you like people to know about FASD?

FASD is a real physical disability that affects the brain.  It is no less “real” or disabling than being visually, hearing, or mobility impaired.  There was a time when people disabled in those ways were marginalized and forgotten.  I hope that eventually the kinds of accommodations people with FASD need will be as common as the wheel chair ramps and curb cutouts you see on almost every corner or in front of every building in the country or the braille on every elevator and ATM.  

FASD is not rare it’s only underdiagnosed.  There are as many cases of FASD as there are of Autism; people just don’t want to discuss it because there is a known cause.  The rates of children with FASD would be shocking if people were really upfront about it and there are equal numbers of adults already coping with it.  As a society we have to begin making the world work for them.   We are a country founded on the principle of all men being created equal.  Neurological diversity deserves as much respect as any other form of diversity.

2.     What do you want people to understand about what it’s like to live with FASD?

You know this is a question someone with FASD should be answering.  As a caregiver the best I can do is say that in my experience people give no thought to how much of what we do on auto pilot every day is only possible because of the way our neurotypical brain works.  Most of us have no idea how many separate neurological processes just happen in our brain to do the simplest most mundane things.  So I think it is impossible for us to really understand how hard, how tiring, and how utterly frustrating it is for people whose brains just don’t run the same way. 

That’s really what I wish people understood – how hard folks with FASD work to do what seems so easy to those that do not have it.  I watch my son and my brother struggle and I think really understanding how hard they work day to day, sometimes minute to minute, would make others a lot more patient and supportive, which is what folks with FASD and those who care for them really need.  There is not a lot of patience or sympathy for most folks with FASD because they don’t LOOK like they are disabled.  I wish people would understand that they struggle as much as any person with a disability you can see.

3.     Where do you get help and support from?

Honestly most of my support comes from other parents with children that have FASD.  It’s pretty rare to find professionals who are trained beyond a very superficial level in FASD and even those don’t really understand what it is to live this day in and out.  We have found a few professionals however, that were really willing to put the time in to listen to us and seek out more education on the subject.  Our son’s Occupational Therapist for example.  She has been just awesome at helping us find ways to manage his sensory challenges as well as addressing motor planning and control.

***I am ashamed to admit this is what I forgot and was nagging at me.  I cannot believe I forgot in the first place.  I have been unbelievably fortunate to connect with a group of adults who are on the Fetal alcohol Spectrum.  The assistance they have provided in understanding my son is priceless.  These folks are incredibly generous in sharing their triumphs and fearless in sharing their pain.  I am constantly in awe of them!

4.     What can professionals be doing a better job at?

For health care providers especially I would say they need to know and recognize their place in the chicken / egg loop that people affected by FASD are caught in.  (When I say affected I mean not just those exposed to alcohol prenatally but everyone in their circle of care – parents, significant others, family members FASD affects them all in some way. ) 

When FASD goes undiagnosed it is a problem not only because that one person and their circle are not getting the support and assistance they need but also because FASD continues to be under recognized at a public policy level and programs for support stay underfunded.  Not many cases reported = not much funding or attention allocated = ignorance and lack of diagnostic / support capacity = not many cases identified and on and on.  I know it is hard, especially when dealing with a birth family, to address this because of the stigma around maternal drinking and the myths and shame that surround FASD but the medical profession has taken on difficult social mores before in the name of public health and this one is desperately in need of their leadership. 

For teachers, social workers, lawyers, judges, nurses and doctors – for everyone really who interacts with people affected by FASD the two very best things they could do would be to 1) slow down and 2) really listen to those who understand FASD.  People need to realize that more time is needed to really understand this condition and the folks that live with it.  I’ll give you a personal example.  My son is dangerously under responsive to pain.  I’ve told people that over and over but either it had not really registered or the school thought I was just one of “those moms,” you know overprotective and hovering.  He had a fall on the playground in his first week at school.  He bounced back up and kept going so the folks watching just assumed he was fine.  He was not.  He had broken his nose.  When they came back into class 20 minutes later and saw the swelling and bruising they finally took him to get some ice on it but when he insisted it didn’t hurt they let him go back to class. 

It was 5 hours before I knew what had happened, during that time normal bacterial that you would find inside a nose had migrated through an internal tear in the tissue into the skin under his eye.  Within two days he had a nasty festering infection swelling up between his nose and eye.  The ENT surgeon we took him to drained the infection but did not put any kind of dressing on it, in spite of being told that my 5 year old was really more like a 2 year old and would never be able to keep his fingers away from the incision.  The infection reoccurred, only this time it was MERSA (a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections) which he had picked up on his hands by touching  just about everything he came in contact with in the hospital and then of course fooling with his incision.  The MERSA traveled into the break in the cartilage and developed into Osteomyelitis .  My son had 5 surgeries and was on antibiotics for over 6 months to clear up a problem that would have been easily dealt with if the professionals involved, at the school and the hospital, had listened and taken our concerns seriously.    

I don’t know how to emphasize it strongly enough – if you have not worked with people affected by FASD in depth please, please, please, listen to those who have; to those who care for them, and to those affected themselves.   So much of the trouble they face comes from totally preventable situations.