Life with FASD

If you've been reading our blog for any length of time, you know the background story of how we discovered that our newest son didn't have Celiac Disease as listed on his profile, but instead had a host of other issues...foremost among them, Fetal Alcohol Spectrum Disorder.  (I wrote about it a little in the post "Home for Six Months".)

Before I begin to describe what life has been like learning how to parent a child with FASD, I want to be sure you know that we are in no way experts on this disorder.  There are so many amazing resources available with much more specific information:  books, websites, support groups, etc.  (Maybe the BEST resource is an adoptive parent of a child with FASD!)  But our hope is to shed more light on the day-to-day issues we face, dealing with Toby's disability and learning what it means to love him and give him the best support in the midst of it.

My prayer is that someone who is considering the adoption of a child with FASD would be able to read our heart-felt thoughts and 15 months worth of experience and have a better idea of what life would be like, and be encouraged that they can do this!

When we first brought Toby home, we did not even suspect that FASD was a component to his strange behaviors.  Our first trip to the pediatrician left us feeling deflated, as the doctor didn't seem to think anything was wrong, maybe just ADHD.  But after a year of seeking more information and finding a different doctor, we now have a clinical diagnosis of FASD in Toby's medical charts.  His disability is documented - which made me at once sad and relieved.  It is real.  We can't get away from it.  But now we can get extra help and resources available for a person with disabilities.  We have a direction to head, and that is always helpful!

When I say strange behaviors, I mean all of those typically listed for a post-institutionalized child, plus some.  One of the most helpful books we read before we knew FASD was a factor, was Parenting the Hurt Child.  I highly recommend this book for prospective adoptive parents - but also for parents to read again AFTER they've brought their child home.

While it doesn't specifically focus on FASD, it is so helpful to be know about the other issues you will most definitely be dealing with in a child who has spent most of his/her life in an institution.  It is important to understand Reactive Attachment Disorder (this Reactive Attachment Disorder Checklist has been helpful for us) as well as those behaviors typically found in internationally adopted children.  (List of Post-Orphanage Behaviors in Internationally Adopted Children)

The reason I mention these other two "lists" is because with Toby, it has been nearly impossible to differentiate when a behavior is simply defiant, is a result of brain damage from FASD, or is an attachment or post-orphanage behavior.  I drove myself crazy in the beginning trying to figure it out.  But the truth is, they all overlap so much, creating such a crazy mix of inappropriate and frustrating behaviors, it is pointless to try to separate them out.  Instead, you really do have to focus on the hurting child.

There are very specific behaviors, however, that scream FASD.  When we began reading about them, we were stunned by how obvious it was that Toby indeed had FASD.  The book that helped us understand his disability the most was Trying Differently Rather than Harder - a little pricey on Amazon, but really the most valuable resource we've collected.

So...what does it look like on a normal, daily basis?

First, FASD is called the "hidden disability."  I find that this may be the most difficult aspect of all.  I know there are other disabilities that require MUCH more work, medical attention, constant effort on a parents' part.  I know this and I so admire the parents who commit to care for a child with severe special needs.  What makes FASD so difficult is that no one who meets Toby or spends a short amount of time with him would ever think he has a disability.  There is no outward sign to alert a person that he indeed has a very real, physical disability.  His brain has been physically and irreparably damaged by the alcohol his birth mother consumed.  (Interestingly, there is evidence that alcohol consumption by the father in the months leading up to conception also plays a role in FASD.)
When people with FASD have a brain scan done, the shape of the brain is actually smaller and misshapen, compared to a healthy brain.  This is a physical disability that no one sees!

Also, because the disorder is definitely a spectrum, the way FASD looks for each child is different.

One of the first things to realize is that their chronological age will almost NEVER be in line with any of their areas of development.  Toby just turned 12.  He does not act 12.  He doesn't even look 12.  He is physically smaller and less coordinated than his same-age peers, probably due to a mix of the effects of FASD on his growth, being born prematurely and poor nutrition during his growing years.  Toby plays best on the level of my six year old son.  He loves bath toys and imaginative play with small animals or stuffed toys.  Again, this is hard to differentiate from post-orphanage behaviors and the need to reparent children who never really got to have a childhood.

We found this chart that shows the discrepancy in timelines for age and development for an 18-year old with FASD.  It fits Toby's trend of development perfectly, but may not be accurate for all people with FASD.

One of Toby's definite strengths is his expressive language ability.  No one who hears him speak believes that he has only been in America a little over one year.  His English is amazing.  He is reading English at a fourth grade level with 95% accuracy!  Many of his American-born peers do not even have that ability.  But his reading comprehension (both in English and in Russian or Ukrainian) is much farther behind than his ability to read (decode) the words.   He is able to memorize the spelling of 20 words each week and score a 100% almost every time...hard words, too, like perpendicular and adaptation.  We are amazed by these skills and praise him for the unique gifts God has given him in this area.  We often tell him, "I don't know any other twelve year old kids who can speak and read in three languages!"  He loves this!

His social skills and ability to interact appropriately with his peers are far behind other children of his age group.  But as the chart above indicates, one of his greatest weaknesses is math.  Abstract concepts like time and money baffle him.  He can memorize his multiplication tables and pass off on the timed test for one set of numbers at a time.  But he is unable to carry forward the math principles he's learned from one lesson and apply them to another.  Logic, reasoning, strategy, cause and effect thinking - these are things that are extremely hard for Toby.  

I'm not going to lie.  It is SO easy to get frustrated with him.  One minute he seems to know something and the next minute, we are back to square one.  I found it interesting to read some of the ways adults with FASD describe the way THEY feel:

"My brain feels like Swiss cheese."

"There's a wall in my brain.  I know what's behind it but I can't always get over there."

"Inside my head it's like there are all these sheets of paper.  Today they're all blank."  (Malbin 21)

The past few days....Toby's sheets of paper have been blank.  We can now recognize when he slips into one of these "Swiss cheese" periods of time.  He forgets the simple family rules he's known for months.  He has a blank look on his face when listening to us.  He gets more moody and shows anger more often.  Sometimes he will actually walk right into me or into a door or window as if he never even saw something in front of him.  

Josh and I are constantly seeking God's wisdom and patience in how to handle these especially frustrating times.  We know in our minds that it is not Toby's fault.  We know he forgets.  We know he himself feels frustrated during these times.  A friend and therapist of ours reminded us recently that we really need to lower our expectations of Toby.  We have to expect the same thing we might expect from our 3 year old.  

These are some of the things we've found helpful so far:  (we are still learning!)

- Toby thrives on routine and knowing exactly what is going to happen next, so we do all we can to keep bed times/wake times the same each day as well as the routines that surround those times (reading aloud, singing hymns at night, etc.) 

- Toby does best when he has a few jobs to do in the house that he knows and does well - no rotating of chores  (he empties the dishwasher in the morning, sweeps the floor at night, puts his own clean clothes away, etc.) 

- Toby is given very little freedom.  I know this might sound mean, but it is for his best interest and the welfare of everyone in our home.  When he is outside playing, I am either outside with the boys or watching them through our 24 windows in our living room!  The moment we have tried to allow him freedom, he breaks something, hurts someone, or breaks a rule.  It is better to not put him in that position.

- We try to link the consequences to the behavior he has negatively shown.  He has very little cause and effect thinking or understanding of consequences.  One example of how we do this is when he uses unkind or mean words to his brothers, he loses his dessert for the day.  (No sweet words = no sweet treats)  

- Toby seems to have a low need for sleep.  He takes a long time to wind down each night and he wakes up in the morning rearing to go without any transition period.  When the alarm goes off at 7am, I often notice that he's been awake long before that.  Thankfully, he knows to stay in his bed and does not disturb anyone else (usually).  We never allow him to have caffeine, we try to limit the amount of sugar during the day.  We encourage LOTS of outdoor play, trampoline time and even wrestling matches with his brothers so that some of that energy is burned off.  And, we use Melatonin and essential oils known to help rest, like lavender and Vetiver.  Melatonin is wonderful! 

- When we made the decision to enroll Toby in our local public school, I met with his teacher before school started and had printed out some information about FASD and written out some of the things we know Toby struggles with, things that would help her know how to handle any behaviors he might show, etc.  She was really appreciative and has been wonderful to work with this year.  

- We keep Toby close and watch him constantly.  He has put himself in dangerous positions on a number of occasions:  the first time we visited friends who had a pool, he jumped into the deep end with no one around and had to be rescued.  (Incidentally, he came out of the pool angry and tried to kick the pool.  No understanding that it was his own actions that caused the calamity.)   When we taught him how to ride a bike, we told him hundreds of times how dangerous it is to go near the road.  Every time we tried to go on a walk, he rode right out into the street.  One day he was almost hit by a car.  Because of these kinds of incidents, we almost never let him out of our sight.  We drive him to school, we pick him up from school.  He plays with friends at our house where we can watch him. (We have one family of friends whom we trust to watch him along with his brothers, but only for short periods of time.)  

We are still learning so much about life post-adoption, FASD, adjusting as a family to having a child with special needs....I'm quite sure we will always be in the learning process.  God is growing us as individuals and as a family.  It isn't easy.  It isn't as hard as it could be, but it has been a challenging road.  But God is gracious and will supply all of our needs.  He will give us the patience and the overflow of His love to pour into our son.

And, truly, FASD is not scary.  It is not something to be afraid of.  We know that God concealed the knowledge of Toby's FASD from us for a purpose - to ensure that we would say YES to what He was calling us to do and not cave into the fears or misconceptions we had about the disorder.  But for anyone who may find themselves falling in love with a picture of an orphan on Reece's Rainbow who happens to have a diagnosis of FASD, do not be afraid!  You can do this!

Sometimes, on my most frustrating days with Toby, I have to force myself to remember that he did not choose to have this disorder.  He did not choose to be an orphan.  He did not choose to live a life in an institution where he had to steel himself against feeling too much affection or sadness.

Inside, he is still a little boy struggling to find his place in a very confusing world.  As his mama, it is my job to wrap my arms around him and assure him that his home - his family - is a safe place.  We are people he can trust and love.  We are people who he should feel completely free to fail in front of and know that he will still be loved.  We are to be his biggest cheering section for his successes in life.  This is the role God has for us and we long to be found worthy of it.

Please keep praying for Toby and for our family!  And please, feel free to contact me if you have any questions about FASD or adoption.  We feel called to share our own journey so that others may be encouraged!

Works Cited

Malbin, Diane.  Trying Differently Rather than Harder.  Portland: Tetrice, Inc., 2002.