Thursday, May 22, 2014

Inconsistency Thy Name Is - Me

You know sometimes I think anyone reading this blog would have to come to the conclusion that I am the most inconsistent, changeable  (hell fickle) person in the world.  In one post I'm talking about my son's irreversible brain damage and then not one month later railing at anyone considering him damaged.

I'm still a work in progress there is no doubt.  Part of me still sees FASD as the enemy, as something horrible that desperately needs to be eradicated.  That part is ruled by fear - it not only hates to see how much my son and my brother struggle, how hard they have to work for every small gain, but it constantly extrapolates into the future what terrible things may befall them.   When I step out of that fear, that gut level visceral reaction, I can see that is the very view making the world so hard for them.

And that is a horrifying thought I need to just sit with for awhile...

I, no matter how much I love them, am part of the problem.

That thought alone is enough to be rather crazy making.  But I believe it.  If I am busy hating something unchangeable about them then I am hurting their sense of self worth.  I am rejecting at least a part of their very identity.  And I am supporting a world view that says:

Your existence is wrong.
Your way of thinking, of being, of experiencing the world is wrong.
You need to be changed, corrected, fixed and prevented.

What a horrible horrible way to treat someone you love.  What a horrible way to treat anyone.

So I keep fighting that view of FASD personally as well as publicly.  I keep reminding myself - even as I tell others - variation is natural.  There are scientists who speak very eloquently on the importance and value of biodiversity.  Unfortunately I'm not one of them and so I struggle not only to communicate it but sometimes even to understand it.  Even through that struggle though, I do believe it.

So please, bear with me here.  I'll get better.  And all of us together will reshape the world to a place that really understands and values the strength that difference can bring us.

Friday, May 16, 2014

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.