Tuesday, July 03, 2012

Failure to Thrive

Last week, I took Keenan in to meet with a local PhD/psych in regards to the fact that, nearly 3 years after homecoming, this child is still an enigma to us in so many ways.

After a bit of pleasant chit chat (his wife, a family doctor, delivered my Miss Hattie Lou 14 years ago), he looked from me, to Keenan, and back to me and said, "So, what brings you here?"

Kerplunk went the legal pad of my notes and reminders hitting the top of his desk.  "How much time did you give us?" I asked.

I began by explaining that, bringing it down to basics, that something doesn't seem to be gelling and that I am fearful we are missing something in the bigger picture.  We have so many things floating about that I can't begin to separate it all.  And I explained my fear that if I don't look into all that I can know, we will be making adolescence and teen years all that much more difficult. 

Systematically, I went through Keen's behaviors and coping mechanisms.  His inability to determine how he feels both physically and emotionally.  His educational history, including the entire IEP fiasco.  His medical history, including tapeworms, parasites, and nonexistent iron stores.  His path of regression, not progression.

At then end of it, the doctor sat, reviewing his notes, circling the occasional line, thinking.  Finally, he looked up at me and said, point blank, "I don't think there's a needle in this haystack."

I blinked.  I was not expecting that response.  At all.

I had to give that a moment to soak in.  Hell, I've had to give it a week to soak in.

The doctor went over his impressions with me.  Nothing Keenan has screams anything specific.  He's not on the ODD scale.  He's not aggressive, he's not violent.  He can be very compliant.  He's not RAD, although he likely has anxious or insecure attachment.  He's had some medical hiccoughs, but given his years in an orphanage, in Haiti, nothing that seems outside a "likely scenario" type of situation.  Difficult and frustrating, yes, but nothing that screams a large, systemic sort of problem responsible for it all.

He shared with me an analogy about a kitten.  If you take a baby kitten, or even a 3-month old kitten, and you put a blindfold over its eyes for an extended amount of time, then remove the blindfold, the kitten will have very undeveloped vision, if it is not in fact blind.

Retinas and corneas need visual stimulation, light/darkness, variations in movement, in order to grow and develop.

Infants and young children are the same way.  Some children, in an orphanage setting from a young age, when not receiving the stimulation/care that they need, will have developmental deficits.

Developmental deficits that may or may not be diagnosable.  Deficits that are not grandscale, but that are a constant presence, lying just under the surface of a child who can seem overwhelmingly normal at times, and overwhelmingly abnormal at other times.

 Just an overall sort of "failure to thrive," due to early life circumstances.

Some children shut down, both to themselves and the outside world.  Some to the outside world.  Some to themselves.

Keenan is pretty shut down to himself.  He wants to interact in the outside world.  He loves attention, can play organized sports with no problems, is learning in school.

But, something in him just kind of shut down.  He did not develop the ability to know what part of his body hurts or how it may feel off.  He does not have a natural ability to express emotion.

As he grows and the world around him expects a growing and maturing child (school work becomes more advanced; society expects age appropriate behaviors; peers begin noticing that the child is a bit "off" in ways), the "shut down" nature of his personhood will become increasingly apparent.

Additionally, this sort of shut down can be compounded by the fact that children learn very early on whether or not they should trust their world or whether they should distrust their world.

Clearly, Keenan's is compounded by a sense of distrust.  He trusts that he will be cared for here.  But he distrusts where his place is (meaning, how important he is) and whether he is special.  So much of his behaviors, particularly the attention-seeking and lack of impulse behaviors, come from this place of distrust.

The doctor commented that while we live in a world of diagnoses and treatment plans, sometimes, what we need is just time and patience.

A LOT of time.

A LOT of patience.

Keenan may have some processing needs which we can look into (we're testing next month), but really, we're just doing that as a double check because no one really sees consistent deficits.  We can keep up with the EMDR/trauma/Play therapies, continuing to model behaviors/concepts that are not ingrained in an orphanage-raised brain.

But in the end, Keenan may be a more passive person.  He may be a person who is not comfortable with feelings or expression.  Truth be told, I know lots of adults like this.

But what we need to do is accept the fact that time is needed.  

Having a highly regarded, very experienced professional listen to everything and say, Look, I think you've done all the right things.  I'm impressed with the resources you have utilized and your dedication to advocating for your son.  And I agree- he's a child who, wow, that's a lot to handle and sort through.  But I really think that it just is an assortment of things that are just there; that aren't connected to a central cause, other than that he lived in an orphanage, and that slowed down a lot of emotional growth and development.

The words sit right with me.  I'm a bit surprised that they do.  We live in a day and an age where we so want to assign a diagnosis to things.  To develop a plan for repairing, healing, growth and learning.

Initially, that's so what I wanted for Keenan.  I so wanted to have something put on paper, be told what resources to hunt down and utilize, and put together a plan of action to do so.  I so wanted to kick some ass for my boy, so that he can maybe have a chance to be the boy that he's somehow not.

But, at the end of the day, some children are diagnosable; some are not.    It can be okay either way.
I feel relief.  I feel peace in knowing that, as far as the professional eye can see, we really aren't missing anything.  That we have a little boy who is struggling with the growing process because of his early childhood history.

That he may be able to shed a lot of the things holding him back and grow a ton.

Or, that he may be able to only grow in little bits, here and there.  That life may be more of a struggle for him.

That we can now set aside this drive to see if there is something we are missing.  We now know what we have.

We have a need time, and patience, consistency and therapy.

Those are things I can give him.  


Stephanie said...

Sarah whatever happened with the "iron stores" doctor? were they able to diagnose anything about his iron?

Sarah said...

Stephanie, the doctors attributed the diminished iron stores to the parasites/tapeworm problems he had for over two years. The iron levels are back to normal, and he's parasite/tapeworm-free now.

Anonymous said...

Wow, it sounds like you have a really great doctor. Congrats on that! I wonder if you have considered Neurological Reorganisation therapy? Thanks x post.