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.

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.

A Perfect Storm (Part Three of Three)

I don’t know much about John's incarceration.  He did not write frequently and no one from the prison would talk to us or tell us what was going on with him.  John was released on parole after 2 years and we did find out, after he had been released that he was prescribed “a lot of pills” while in jail.  We never did learn what specific medications he had been on or for what because John could not remember the names of them.  He only knew that there were pills to help him stay calm, different pills so he would not be depressed and anxious, and yet more pills to help him sleep.   When John was released he was told he had to live in a halfway house in one of the worst possible neighborhoods of a city about 30 min from our family home.  As soon as John called us – the day he was released - we began attempting to contact his Parole Officer. 

I had spent the period of John's incarceration studying his neuropsych reports and learning about FASD.  We knew from John's probation and from what we had learned about FASD that without support, without an external brain working to help him with the executive functions he lacked John would not be able to successfully navigate parole.  Our mother attempted to accompany John to three different meetings with his PO but was told she had no place there and would not be allowed into the office.  She stayed anyway and tried to write down any instructions or rules John could remember from his meetings with the parole officer but most of what John was able to tell her was very generic. 

“Keep your nose clean, boy.”

“You have another appointment next week.”

“When next week?” she’d ask.  “Um, I think the same as this one?” he would say.    But usually he was wrong about the day, or the time, or where he was supposed to report to; the PO’s office, the drug testing clinic, the Fresh Start support group.  Or if he remembered the day, the time and the place correctly he would lose his bus pass or get on the wrong bus and end up missing the appointment again.

John rapidly became depressed and withdrawn.  Although I live several states away I made the trip to visit him several times to encourage him. I called, faxed, and wrote letters endlessly to John's PO, to the head of that office, even a couple to the State Board of Parole.  No one was willing to so much as answer a call or return a letter.  John had been out about 2 months when I noticed on one visit that he seemed unnaturally lethargic and his eyes were highly dilated.  When I insisted he tell me what he was on he swore up and down he had not used any illegal drugs.  In fact he was at great pains to show me the pack cigarettes he had purchased at the minimart right across from his halfway house. 

It turns out they were a newer form of synthetic marijuana.  For those like me who have no idea what “synthetic marijuana” means – it is a designer drug in which herbs, incense or other leafy materials are sprayed with lab-synthesized liquid chemicals to mimic the effect of tetrahydrocannabinol (THC), the psychoactive ingredient in the naturally grown marijuana. The original forms of this sold as both “Spice” and “K2” were banned in 2012.   These drugs have become increasingly popular however, because as each brand of synthetic cannabinoid is banned a new one is promptly developed and “legally” sold until it is added to the list.  John had indeed legally purchased the cigarettes he was smoking but he failed his drug test that week none the less.  He did not understand that.  He had no idea how something he could legally buy at the same place he got his morning Pepsi was illegal.  But he promised not to touch it again and his PO seemed willing to overlook it.  We don’t know for sure what his thoughts were because again he refused to answer any of our attempts to contact him.  The only thing John shared with us from that meeting was he had been told “Take responsibility for your actions and be a man.” 

John continued to miss, and occasionally make, appointments and found a job doing maintenance work as a volunteer for a local church.  He was able to keep good attendance at the church position because they were willing to keep his hours consistent week to week.  We knew things were not ideal with John's situation.  He would tell us occasionally about being afraid of his housemates at the halfway house, things that we purchased for him like clothing, bus passes were stolen or lost, and we knew his attendance at various appointments was spotty.   In spite of this, things seemed to be settling into a holding pattern.  There were no repercussions for his failed drug test and while his living situation was unpleasant John seemed to be doing ok.   We stopped bombarding his PO with requests for contact.  It seemed futile and he did not seem inclined to penalize John for his slip ups.   This was a serious mistake on our part. 

What John's PO was doing was compiling a case to have him returned to prison for his full term.  One day when John turned up at his PO’s office he was met by an officer with a warrant to take him immediately to jail.  He was able to call and tell us where he was but not much else.  He did not understand why he was there or what was going to happen next.  We were frantic.  I called every number and resource I could dig up through the internet.  I finally found two sympathetic and helpful people.  A secretary at the Public Defender’s office who got me the name of the person assigned to John and the date of his parole violation hearing (only 4 days away) and Kay Kelly from the FASD Justice center at the University of Washington.  Kay pointed me to several useful papers written about FASD and the Justice system as well as an excellent web site by David Boulding a Canadian Lawyer who has done a lot of work in the area.   She also helped me dig up the state laws on Parole and violation hearings etc.

Armed with that, I started yet another phone and letter writing campaign.  I wrote a 14 page letter for the PD to give to the judge at John's hearing.  I sent copies of the American Bar resolution on FASD, copies of all the letters I had sent John's  parole officer, and copies of John's  diagnosis and testing results.  John's Public Defender was open-minded and helpful.  The judge was open-minded as well.  All of the violations raised that were related to Bill’s areas of difficulty (ie missed appointments) were dismissed.  The failed drug test, although six month old by this point, was the only complaint upheld.  The PO asked for 24 months in the state penitentiary so John “would learn his lesson”.  Mercifully the judge instead sentenced John to 90 days in a drug rehab boot camp program and instructed that the intake and outplacement coordinator there work with us to help John.

John completed his 90 program with no difficulties and was released to parole residing in our mother’s home.    His new Parole Officer has read all the info we provided on FASD and is working closely with us to help John reach his goals.  John has not had a single violation of the terms of his parole for 3 months now and was granted permission to travel out of state for the holidays.  We celebrated as a whole family for the first time in 3 years.  I don’t remember a holiday sweeter for us since our father passed away. 

I wanted to share this story because it should not be this hard.  All of the systems involved to help a child like John failed him.  A family should not have to fight so much to be allowed to assist someone who is disabled by FASD.  Can you image what the trajectory our brother’s life would be if the public defender and judge at his second trial had not listened to us?  What do you suppose happens to all of the young people who have families less motivated, less informed, or less just plain stubborn than we were?  Our prisons are filled with people on a revolving door program who, just like John, never had a truly fair chance.  

*This story was shared with my brother's permission although I have altered his name to protect his privacy.

A Perfect Storm (Part Two of Three)

When John joined our family my parents were not knowledgeable about FASD in specific, but did have experience parenting other traumatized children.  Of the 6 children they raised 4 came from difficult beginnings.  They by no means did everything right but our father took a special interest in and spent a lot of time with John having just retired from full time work when he arrived.  After almost a year of trial and error and just plain hard work for both John and my parents, he was off of all but one ADHD medication, functioning wonderfully at home, and keeping his grades decent enough at school to be allowed to play on the basketball team.  The next 3 years were good ones.  My parents were strict but loving and John thrived with the high level of structure and attention they provided even if he still struggled mightily at times, particularly at school.

Then, when John was 17 and starting his sophomore year in high school, my father passed away unexpectedly from a heart attack and it all fell apart.  The adult children in our family, including me, all lived far away and my mother could not cope with the grief of losing my dad and three grieving teens, one of which was John.  John began to cut classes, then to skip school entirely.  He lost his place on the basketball team and began running with a different group of friends.  There were multiple in (and out of) school suspensions.  When John stayed out all night our mother called the police, frantic that something might have happened to him.    When the police located him at a friend’s house John admitted to drinking and to smoking pot as well as using pills he got from his “friends,” (both uppers and downers).  This led to another stint in a group home with state mandated rehabilitation services.  He completed his 30 day rehab and returned to living with our mother.  This was the first time any doctor or therapist mentioned FASD to her.  They did not provide any information about FASD or its impact other than to caution her John would be much more susceptible to addictions and to watch him closely for any signs of relapse.

At 18 John hung out with kids who were younger than him chronologically, 15 or 16, but far more worldly and street smart than he was.   They suggested one evening that it would be “fun” to break into the garage of another friend while he was away and mess with his bike.  John fell in with that plan easily enough and when the boy’s parents did not find it at all amusing and called the police John was the only one charged as an adult.  He was charged with and convicted of felony breaking and entering.  John’s lawyer did nothing to raise his disability as part of his defense.  He never even brought it up at sentencing.  Our mother begged the judge to consider the recent loss of our father and John was given 5 years of probation with very strict probation rules.  Any violation of them would mean a 5 year jail sentence.

John managed to hold it together for the rest of his senior year of school and although his grades were very poor he did graduate.   As an “adult” over the age of 18 and a High School graduate, John no longer qualified for any of the state programs he had been part of (respite care, after school programs while my mom worked, etc).  My mom helped him find a job at a grocery store but he was unable to handle the constantly shifting schedule of work hours and was quickly fired for missing work, showing up late, etc.  With too much time on his hands and too little supervision John began to run with the wrong crowd again.  His friends (mostly younger than him again) convinced him that his probation appointments were not “really mandatory” and he began missing them, here and there at first, but more regularly over time.  The probation officer would lecture John about missed appointments but never spoke to our mother, who had no idea this was happening.    John failed a random drug screen and then a second.  He overslept and skipped a third.  Since John was a legal adult it was not deemed necessary to inform our mom of anything going on.   The first hint she had of any problems with his probation was the officer at her door that came to arrest John and take him to county for a parole violation hearing.

Our mother was in no financial shape to afford a private attorney again.  She tried to contact John’s public defender but was rebuffed.  John, embarrassed to have her find out "how badly he had fucked it all up" had asked the Public Defender "not to tell his mom."  Again, John is an adult in the eyes of the law, so a childish desire to prevent our mom's disappointment was interpreted to mean do not involve her at all in his defense.  The judge for John's hearing was again told nothing about John's FASD or any of the testing that had been done documenting his cognitive and executive function issues.  He saw, as most would, a young punk who "didn't learn his lesson the first time" and he ordered that John to serve out his original 5 year sentence in jail with no credit for time already served waiting for trial or while on probation.  

*This story was shared with my brother's permission although I have altered his name to protect his privacy.

A Perfect Storm (Part One of Three)

**Note - I have my brother's permission to share this story.

I've started to blog about this story about my brother’s involvement with the criminal justice system so many times and stopped.  When I try to write it I seem to either be hysterically emotional, or robotically factual.  I can’t seem to modulate the tone from either extreme.  I've tried to stick with the factual here.  I don;t know that I have totally succeeded.   Is it even possible to do when you care so much?  It was also hard for me to decide where to start this story.  How far back do you go?  The roots of the situation go back before birth right?  

The fact is, my brother John is almost a text book case of how to insure a child affected with FASD ends up tangled up in the criminal justice system.  Every risk factor for the development of secondary disabilities is there.  John was removed from his biological mother’s care – along with his 4 siblings - at the age of 6 for abuse and neglect.  His mother was addicted to both alcohol and drugs.  She was regularly beat up (along with the kids) by various "boyfriends."  John and his twin sister were born alcohol exposed.  Their mother reported no “drug” use while pregnant with them.  The younger two children are confirmed for poly drug and alcohol exposure but none of the children have an FASD diagnosis in the CPS files shared with the families they were placed with and no specific effort to place them in therapeutic foster homes appears to have been made.

By the time he entered the foster care system, in addition to the prenatal alcohol exposure, John had already been abused physically and sexually.  When he rather predictably acted out with rages he was separated from his siblings and bounced from home to home.  By the time he came to our family at the age of 13 he had done two stints in group homes, all kinds of state mandated therapy, and was on a cocktail of 6 different medications to “control his undesirable aggression.” 

The risk factors identified  by over 50 years of research that  increase the likelihood a child with FASD will engage in unhealthy behavior as a teen or an adult (such as the use of alcohol, tobacco and other drugs, violence, suicide, or involvement in the criminal justice system) are:

• Having an IQ above 70.  Check. John tested at 85 at the time he came to us.

• Lack of early diagnosis.  Check.  John was not formally diagnosed until after he came to us.  He received no interventions targeted at a child with FASD.

• Experiencing neglect.  Check.

• Experiencing child abuse (physical or sexual)  Check and Check.

• Experiencing other family violence.  Check.

• Family history of substance abuse, mental illness, and / or criminal activities.  Check, Check, and Check.

• Family access to drugs, alcohol, and weapons. Check, Check, and Check again.

• Poverty.  Check.

• Multiple foster placements (or family moves). Check.

• Early sexual activity. Check.  John reports first being sexually active (voluntarily) at the age of 11 in one of his group home placements.

• Early academic failures.  Check.

Every possible card that could be stacked against him was from the very the beginning.  

What would you do?

When I entered Little Man's school yesterday a teacher's voice stopped me in my tracks. She wasn't quite shouting but her voice was raised. Raised in unmistakable anger.  

"You look at me. Look me in the eyes, say you are sorry and mean it. I said look at my eyes when you say it."

Her voice hurt me. Let's leave the words aside for a minute, just the tone of her voice knotted my stomach. My jaw clenched and my whole body braced for a blow. I've heard that tone voice before as a child myself and all these long years later it still hits me as hard as any physical slap. She was not talking to my Little Man and years of being judged and second guessed as the mom of a special needs child makes me reluctant to step into any adult child interaction I don't know the background and context of but here it is hours later and I can't get that interaction out of my head. 

Perhaps it is because as much as I hate to admit it, I've heard that same tone come from my own mouth. It leaves me floundering in an ocean of shame when it happens and thankfully it is rare. But it should be never because that tone never taught me anything true or of value. It has no place in a child's life. It's the voice of hate. I do not mean to say that teacher, or I, hate any child. That voice comes out in me when I am so beyond tired, or frustrated, or afraid, that I hate the situation I am in, the way that I feel, sometimes even myself in that moment. 

But a child doesn't know that. They only know what they hear and feel. That voice takes up residence in their heart and mind just waiting for its chance to leak out through their self-control and contaminate the next generation. I don't know how you purge that poison. I do know slowing down, taking my time, being more intentional and less reactive with my kids is what helps me keep it under control. But there are still those moments when stress has ground my nerves as raw as hamburger and I feel it bubbling up my throat. I've gotten better about giving myself a time out before it erupts but I think that will always be a struggle.  I assume for the teacher I heard, she had reached that same place where her control and restraint simply wore too thin. Right now I'm wondering, was there some way I could have helped in that moment at school. Was there a way to helpfully intervene or was letting it pass really the only way to not make a bad moment worse. 

If the emotion had not already been so high, I would have said something about her words at least. Not every child CAN " look you in the eye." And under emotional stress, a flat affect or even a smirking mask may be the best any child can produce. I don't know if the little boy involved in this incident has any neuro cognitive or developmental issues. He may very well not but I do know that exact scenario plays out for children who do have those issues all the time. 

I think that is why it's still troubling me. It had nothing to do with Little Man today, but some day it will. Did I wimp out on an opportunity to educate? Can someone that worked up be reached in the heat of the moment? What should I have done? Is there something I should do now after the fact? I still don't know. 

What would you do? 

Introducing

Everyone is different.  Some love "Awareness Stuff" others do not.  Being in the first group it irritates me how little there is out there for FASD.  So I decided to create my own.  For anyone else who is interested you can check out my Zazzle store at: http://www.zazzle.com/neurodiversitynow
Order something if you like - or just use it as an idea for creating your own "stuff".