Monday, May 28, 2012

Alphabet Soup (or, Gideon's Diagnoses)

 Gideon continues to be a sunny, eager-to-please, compliant little guy.  I keep waiting for him to challenge me, to say "no" when I ask him to get out of the toilet water or to clean up his toys or to head to bed at bedtime, but so far he complies with my requests without fail, usually with a sunny grin (although if he REALLY doesn't want to do it, he might make a fussy face and flap his arms as he does what he is asked.)  However, that does not exactly mean that he is "easy" to parent.  Because I am reminding him to get out of the toilet water about twenty times a day.  And that's only the times that the other kids forget to shut the bathroom door, or else it would be more.  I am shooing Gideon out of the kitchen probably dozens of times each day.  I am asking him to get his toys out of his mouth over and over again, all day, every day.  He complies cheerfully, over and over again, but that does not mean that he will not be right back in the toilet water two minutes later, gleefully chucking his toy cars into the water or giggling as he makes waves with his hands (I know . . . ew.)  He is compliant, but he does not really "get" the cause and effect sort of thinking that you might expect from an almost-six-year-old.  He does not remember that we have already been over and over and over this.  Every single time I find him tossing toys through the baby gate, or into the washing machine, or into the kitchen sink, I remind him that it's not okay, and every single time, he flashes me a sweet, lop-sided grin, as if to say, "Oh, that's not okay?  All right then.  No problem, Mama!  I'll go find somewhere else to throw my toys," then he gathers up his handful of toys, and toddles away from the "no-no" zone.  I have cared for a lot of kids over the years, between foster care and running a day care, and I can say, with complete assurance, that this kid is not intentionally being defiant, sneaky, or naughty.  (I've had a lot of kids that are . . . believe me, I know it when I see it.)  He just forgets.  Over and over again.  All day.  Every day. 
 Every day is a brand new day for Gideon.  And that means that every day, I re-teach him the exact same stuff.  You see, Gideon has Fetal Alcohol Syndrome.  I have suspected that he has FAS since I first met him.  I had hoped I was wrong, but the more I was around him, the more I observed his thinking processes and behavior, the more I came to realize that it was true.  Gideon's neurologist just officially confirmed the diagnosis this week.  

I am glad I did not know this to be true before I met him, because FAS is a diagnosis that I am not sure I would have been okay committing to, to be perfectly honest.  It is intimidating.  It is a big deal.  I committed to adopting a child with cerebral palsy.  That, I am familiar with.  That, I was prepared for.  I was prepared for some delays due to institutionalization, but I was really expecting MORE challenges related to CP, and less related to cognitive delays.  Honestly, CP is the least of Gideon's challenges these days.  He is getting around great.  He can walk.  He can use his hands.  Compared to my beautiful Blessing, Gideon's CP is a pretty minor deal.  

But the FAS?  That is a whole different story.  This is a challenge that he will have to work hard against his entire life.  And so now I am spending a lot of time researching how to help him to do that.  I honestly was not sure I was equipped to parent a child with FAS.  But I committed to Gideon, knowing that I was committing to this child for the rest of his life, no matter what.  And Gideon has FAS.  So here we go. 
 According to Wikipedia:

The primary disabilities of FAS are the functional difficulties with which the child is born as a result of CNS damage due to prenatal alcohol exposure.[11] Often, primary disabilities are mistaken as behavior problems, but the underlying CNS damage is the originating source of a functional difficulty[54] (rather than a mental health condition, which is considered a secondary disability).
The exact mechanisms for functional problems of primary disabilities are not always fully understood, but animal studies have begun to shed light on some correlates between functional problems and brain structures damaged by prenatal alcohol exposure.[7] Representative examples include:
Functional difficulties may result from CNS damage in more than one domain, but common functional difficulties by domain include:[7][49][51][54] (This is not an exhaustive list of difficulties.)
I look at this list, and I just feel grief that my darling little boy is going to be challenged by many of these things all of his life, because of something that happened before he was even born.  I am not going to let the diagnosis limit him.  I am not going to let him use it as an excuse.  But I am glad to have the diagnosis, because it definitely helps us to understand Gideon.  Helps us to understand why he is just not "getting" things that we have expected him to get.  And helps us to know how to help him, and what he needs from us.  There are some great books and resources about behavior modification therapy, neurodevelopmental therapy, etc, and how to help a child with FAS to succeed in life, and I am doing my best to learn!

Medically, Gideon's needs are not as urgent or extensive as Micah's.  However, he does also attend Physical Therapy, Occupational Therapy, and Speech Therapy every week.  He is going to need thousands of dollars in dental work done in the very near future.  Every tooth in his mouth is riddled with cavities.  Some of them are causing him pain, but we will not know until we sedate him how extensive the damage is, and therefore how many teeth actually have to come out, because he was a screaming, frantic, panicky mess when the dentist tried to examine him.  So that is one surgery that is coming up soon.  

He also has an MRI (also sedated) in a couple of weeks, and while he is sedated he will be getting his first botox injections done on his legs, which will hopefully help his feet to flatten out, so he does not walk on his tiptoes anymore.  If the botox does not work we may be looking at serial casting, which would make him (and all of us) miserable, so please pray that the botox works wonders!  If the botox works then we will soon be able to get Gideon fitted for orthotics.

As you can see, Gideon is enjoying the challenges of our expertly-designed physical therapy course (a.k.a., the goat pasture):

Some other random thoughts (and challenges):  Gideon is busy.  He hardly ever stops moving.  Unless I am right there with him, keeping him engaged and focused, he is all over the place:  he picks up toys, drops them, picks up more toys, throws them, wanders around aimlessly, touching everything, getting into everything.

He avoids eye contact.  

He does not answer yes/no questions or seem to know how to answer questions.  I ask him if he needs a clean diaper and he gives no response. 

He does not seem to understand that he has choices in life.  When I ask him if he wants to wear the motorcycle shirt or the puppy shirt, he doesn't even examine them.  He just grabs the closest shirt and looks at me hopefully, trying to figure out what it is that I want from him.  When I offer him milk or juice, he looks baffled.  When I ask him if he wants more lunch, or if he is all done, he obediently signs "more" and then "all done," and looks at me blankly, waiting to be told what to do.  

He is more likely to be spinning the wheels on his toy car than to be actually driving the car.  
He does not play socially with the other kids.  

He does not dress himself, or seem to have any concept of how to do anything other than push his arms through the sleeves.  He wears diapers.  He doesn't seem to mind having a messy diaper at all.

He is very much like a one-year-old.  The neurologist confirmed that he meets all of the criteria for additional diagnoses:  ADHD and autism.  However, we are not in a big rush to label him with these additional diagnoses yet.  We already have enough of an alphabet soup of diagnoses for him without adding ADHD and ASD.  We are going to give him six more months at home, six more months of therapy and living in a family and learning and making up for lost time, and then we will reassess the situation. 
 Because we have a lot of lost time to make up for.  According to his developmental assessment, Gideon is functioning at the level of a 9 to 18-month-old.  He can follow directions, and does so cheerfully, but two-step directions are beyond him.  He does not understand even the simplest wood puzzles.  He cannot for the life of him figure out a shape-sorter toy:  he has not figured out how to rotate the square shape just a little bit to make it slip through the square opening in the toy.  He just slams the square shape against the opening, over and over again, and looks perplexed that it is not working.

I have debated whether to share the FAS information on this blog, because I worry that some people will look at him and see the FAS, instead of him.  But I also have decided to be honest about what it is really like to parent these boys; the good, the bad, and the unexpected.  And there is so much good!  For example:

Gideon understands English very well.  He has learned so much, in so little time.  When I say, "Please put this diaper in the garbage," he does it.  "Put your crayons back in the box," and he does it.  "Give this to Gracie," and he does it.  "Where is Daddy?"  He points to Daddy.

Although he is still only saying one word clearly (mama) he has several other words that I am recognizing (no, milk, daddy) and a whole lot of babbling and gibberish.  

He sings!  He has started to wander around the house making little ah-ah-ah-ah noises that sound just like "Twinkle Twinkle."  And he's in tune!

He asks me questions by making the sweetest little noise, like Curious George, with his voice rising up into a question mark, as he either points at what he is wondering about (like he will point at a car driving by on the road with his "aaaaahhh?" noise) or holds the item two inches from my eyeball to show it to me and question me.  I tell him all day long what things are called.  I talk to him about who, what, when, where, and why, trying to guess what his question actually is.  I show him things, let him touch things, talk to him about things . . . and he is soaking it all in.  I can see the wheels turning.

He is SMART!  He is always looking at how things are put together, and trying to take things apart.  He wants to know how everything works.

As I mentioned above, he is using some sign language to communicate.  He can sign:
all done
ice cream
thank you
 . . . and probably some more that I am not thinking of now.  Most of these signs he only does if I do it first, and then he copies me, but he is starting to think of signing on his own recently, without me having to show him the sign.  For example, he waves his empty cup at me during dinner, making his "aaaahhh?" question mark sound, and I say, "Your milk is all gone, isn't it?  What do you want?"  Then he will think to sign "more" "milk" "please," all in a row (in any order, though!) and then he grins with delight as I pour him more milk.  I love it!  I can see the light bulb going on.  The kid is starting to realize that he can communicate with these crazy hand-flapping things mama keeps doing!  :)  

He is doing much better with transitions.  Sometimes we can walk into an appointment or a store without him screaming or flapping or scratching his ears at all!  And even when he does, it generally is a quick storm cloud that blows away within a couple of minutes, where it used to be a raging storm that could linger for ten or twenty minutes.  He has some picture cards that seem to help him with things like this.  For example, I will hand him the card with the picture of the van on it, the card with the therapy building, and the card with the therapy ball, and explain to him that we are going to go get in the van, drive to therapy, and play on the ball, and he stares at the cards closely, clutches them to his chest, and heads for the van.  We look at the cards again as we arrive at therapy, and again in the waiting room.  It seems to help!  I just need to take the time to make cards for every other place we go . . . it's a work in progress!  

He grabs my face and kisses my cheeks, over and over again.  He kisses like a baby, mouth wide open, so yeah, we are working on that, but it is so sweet!

He is a gentle little lamb of a boy.  No aggression.  This is a very big deal, since we've had more than our share of that particular issue with foster kids in the past, and this was one of the issues that I was most concerned about, having so many other small, vulnerable family members in our home.  He does still self-harm, including pulling out handfuls of his own hair, scratching his ears or legs until they bleed, and banging his head, but these behaviors are becoming very infrequent lately.  Usually when he gets overwhelmed now, he sucks his thumb and rocks himself (much better than making himself bleed!) or if he is very upset, he screams a blood-curdling scream, thrashes and flaps his hands wildly.  But I have never, ever seen him lash out at another child, or even look like he was thinking about it.

He loves to help!  He puts clothes in the washing machine with such enthusiasm!  He sweeps the floor with our little kid size broom like it is the most fun he's had in his life.  He puts his toys away happily!

He has learned how to chew food!  In just two months of work with a chewy tube and a speech/swallow therapist, some baby food puffs and some cheerios, we have gone from sucking on food and then spitting it out to actually being able to chew small bites of soft food up and swallowing it!  He is not quite able to eat just anything yet, but it is getting much better!  Soup can have chunks in it now!  He can eat canned diced pears, and small bites of soft meat, and cheese cubes!  Things like sandwiches, pizza, and tacos (very essential food items around here for the other kids) are still a bit too challenging so far, but we will keep working on it.  

We are seeing far fewer negative attention seeking behaviors lately.  He used to grab papers out of my hands, crumple them, and toss them across the room, then turn and stare at me, wild-eyed, waiting to see what would happen next.  He would grab Grandma's glasses and throw them across the room.  He would grab plates of food, toss them on the floor, and then look, delighted-and-scared-and-dazed, at me, waiting to see what I would do.  Obviously this is how he got attention in the orphanage.  He knew that he needed attention, and negative attention was better than none at all.  My smart boy knows a whole lot of ways to really get a grown-up's attention.  Well, it used to work for him, in the orphanage.  But he quickly learned that mama is very boring.  Mama never reacts the way he wants.  Mama says no like a robot, removes him from the trouble area without any eye contact, and then it is over.  No fun.  No attention.  Very boring.  So he stopped doing it.  Then mama finds something wonderful that he is doing and tells him how wonderful he is.  Or plays a game with him.  He loves that.  Much more fun.  Like I said, my boy is smart.  He figured out the new game plan pretty fast, and I hardly ever see the old negative attention seeking behaviors these days. 

He is learning to laugh appropriately.  This one is a bit hard to explain, because I am still trying to figure it out.  When Gideon first came home, he would giggle hysterically, but it was not happy laughing.  It was nervous, overwhelmed laughing, it would happen whenever something out of the ordinary happened, like new people in our home, going someplace, or changing our routine, and it very quickly escalated it either a) spitting in people's faces or b) vomiting.  Both of which resulted in him laughing even more maniacally, eyes wild and glazed, as he looked at the mess he had made.  So we quickly decided that Gideon needed things very calm and that whenever he started laughing we needed to help him to redirect and de-escalate immediately.  (And if he did vomit or spit, we have been sure to not react at all, because he is just desperate for a reaction when he does this . . . it is totally a negative attention seeking behavior.)  Anyway, we still see this sometimes, so we strive to keep his life calm and predictable.  But more and more, when I hear him laughing, I can tell that the laughing is different.  More genuine.  Actual, happy laughing.  Joy!  Delight!  Ahhh!  I love it!  I still stick close when I hear him laughing, to help him keep it on a calm level, and not escalate into hysteria, but definite progress is being made, and I am so in awe of the healing power of our Lord as I see the amazing progress this boy is making in such a short time.  I see the Lord breaking chains that I thought might take years to break.  I see healing, and the power of the Lord at work in my son's life. 

Gideon has compassion.  When Blessing has a seizure, he pats her arm and looks very concerned.  When Micah throws his sippy cup, he runs over and grabs the sippy cup and gives it back to his brother. 

He waves bye-bye.

He gives high fives.

He claps his hands when everyone around him is clapping.

He goes to bed like a champ, stays in bed all night, sleeps soundly, and waits in bed until I come into his room in the morning.  Ahhh!  I love sleep!  I love kids who sleep! 

He falls down over and over again, all day long, and he never gets discouraged.  He has a lot of difficulty keeping his balance, and he falls A LOT.  He is very good at falling.  And every time he falls, he pulls himself right back up again and keeps right on going.  He has an amazing, resilient, persistent spirit.

And it is that spirit, I believe, that makes the difference.  He has FAS.  He has CP.  He has endured abandonment, horrific neglect and physical abuse.  He has significant developmental delays.  This kid has been through A LOT!  But when I see him, with a grin on his face, a light in his eyes, and a spring in his step, what really strikes me is not where he has been, what he has gone through, or what is holding him back.  What really shines through is the hope, the determination, and the spirit.  He is moving, always moving forward.  He never gives up.  

God has brought him to us, brought him here, for a purpose.  A good and holy and perfect purpose.  CP will not keep him from that purpose.  FAS will not keep him from that purpose.  He is God's beautiful little boy, and even though we do not yet see the whole big picture, we have faith that God is in control and that God is just as in love with this kid as we are! 

And we are so amazingly blessed to be a part of his story!


Anonymous said...

God bless you! FAS is a dx that has always intimidated me since reading "The Broken Cord" in college. But now, looking at Gideon and hearing you describe him it is possible for me to see MORE than FAS. He's a beautiful boy with a precious soul. He is Gideon. I'll continue to pray for your family, but I am certain you have a fantastic future ahead!

Judee in Iowa

Desert Lily said...

I loved reading about "life with Gideon!" What a sweetie he is.

I appreciate your courage in sharing about the FAS. Now I see a glimpse of what FAS is like--or, what life with one child who has FAS is like. He is Gideon first of all, a child created by God, who is affected by FAS--but it isn't all of who he is.

Sarah said...

What a great post! Gideon is who God made him to be - a little boy who is now loved and cherished. He is not the list of diagnosis's that some people see as making him less then he is!

Jolene said...

Truly, truly incredible. What a blessed boy Gideon is to have you as his Mommy - to love him, to study his needs, and to care for him according to his special criteria. I admire you so much!

Nealy said...

I encourage you to visit regarding neurodevelopment approach to Gideon's FAS. They are working with three of my adopted grandchildren who have similar "each day is a new day" issues and the results are incredible. You have such a wonderful attitude toward all your kiddos! God bless you today and every day.

rosedel said...

This was a good post. I would be afraid to commit to a child with FAS, too. Afraid of the possible aggressive behaviors. I am glad that Gideon is sweet and compliant. He seems to be doing really well with so many things. I think as he settles in with you and feels safer and safer you will see big jumps in his learning. Thanks for sharing him with us.

Jill said...

Thanks so much for sharing, Rachelle. I'd encourage you to join the "After the Rainbow" yahoo board too if you haven't already. LOTS and LOTS of great info there from very experienced ladies. I've learned a ton.

Susie said...

You're a brave woman - and a very smart one to seek a diagnosis early on! (all kinds of research shows that the earlier a child is diagnosed with fasd, the better their life outcome will be!!).

There are a ton of moms that blog about the joys and challenges of raising kids (many adopted) with FASDs, and I wanted to pass along my faves:

Kari adopted 2 Ukrainian RR cuties last year - victor (the oldest) was diagnosed with fasd too --

Diana adopted 2 boys with FASDs from Ukraine  -

Barb's blogs about her rest daughter --

Mary adopted 2 cuties from Russia, the oldest of which has fasd -

Several of Dorothy's kiddos have FASDs (& she does an awesome job homeschooling them) -

Anonymous said...

My older son adopted from US foster system is dx with FASD. We have come a long way and now many kids are getting services based this diagnosis alone, but 8 years ago I latched onto the secondary diagnoses of ADHD and of Asperger's Syndrome to get my son the addtional education services needed.

I belong to a yahoo group 4adoptFASD that is great and we try to do family get togethers/camps. It is very supportive group and I originally felt very isolated until I found them.

The Tiny Team said...

Great post! I am so glad God lead Gideon to your family, you are so weel equipped to help him reach his fullest potential! Such a beautiful boy!


Alexandra said...

Thank you so much for this post! I have just discovered your blog and as a mom of an adopted daughter with FAS, I definitely relate to a lot of your struggles but also rejoice in my daughter's amazing personality, determined attitude, and every success. Your stories about Gideon remind me so much of my little girl (she just turned 7). It's always great to hear similar stories about remarkable kids!! Gideon is lucky to have you as a mommy! :)