Friday, January 25, 2013

Joshua - Two Months Home

It's hard to believe that Joshua has been with us for two months.  In some ways, it feels like he's been here much longer, and in other ways, it feels like it's only been a week or two.  Joshua continues to inspire and amaze us.

Physically, he continues to gain weight and eat well. His diet is not entirely age appropriate, but he is eating textures (such as gently mashed sweet potatoes - one of his favorite foods).  We put whole wheat bread chunks into soup broths and have increased his protein with chili, baked beans, and refried beans.  These sometimes lead to some pretty incredible diapers (!!) but they are rich with protein and fiber, both things he needs.  He still only prefers to drink water and struggles to drink from a cup, but we are working on these things.  He loves to rough house with my husband and his smile simply lights up the room.  There is no one he  has met that he has not thoroughly charmed.

Emotionally, he is learning the routines that we've instituted and tantrums have decreased.  He understands that crying is not an appropriate way to make a request and has learned the signs "more" "help me" and "drink".  He knows the sign for eat, but only uses it when he actually sees food or hears us say "eat".  He also knows the sign "all done".  In language, we know he understands a great deal more of what is being said to him.  When we say "all done", he signs "all done" and then  hums, with proper intonation, what we are saying.  I often say I wish I could just "unzip" his mouth, because we hear so much humming in response to our language to him.  He will look at me and wag his finger (a sign for 'no') and then hum, "Humm-MMM!"  which is "No TOUCH!"

We use simple language with him in repetitive format so he can start to understand.  Redirection comes in the form of "No....[insert thing]."  No touch.  No throw.  No push.  No hit.  With each, we try to use a sign.  I have been forced to be incredibly vigilant because it's important to catch him in the undesired behavior as he's doing it.  Otherwise, he may not make the connection that we are correcting him based on an action.  I have literally stopped mid sentence, excused myself from guests, or stopped in the middle of cooking dinner if I observe an unwanted behavior.  There has been much progress in this area.  He has learned that there are consequences, and they are universally applied.  We employ a "time-in" chair for him.  When he does something he should not, he is approached, and the undesired action is reinforced, "Joshua, no throw."  Then he's placed in a chair in our family room.  We do not leave him alone, but do not engage him.  When time is up, we approach him again, repeat what he did, "Joshua, we no throw!" and then ask, "Okay?  All done?"  Then we get him up, give him lots of hugs and kisses and encourage him to "try again".  We try to go from that to a preferred activity that he enjoys so he understands that, while there are behaviors we will not tolerate, he is loved always.  Doing this consistently, the "time-in" chair is used less and less.

Because the consequences are so predictable, I knew we were making progress when I entered our family room and discovered Joshua sitting in the "time-in" chair without being placed there.  This has happened more than once.  Sometimes, I can ascertain what he's done (I may see a toy thrown, for instance) but other times I cannot.  When I don't actually view it, I don't allow him to sit there.  Instead, I might say, "Okay, Joshua, we don't throw, now let's get up."  I have to admit, this was also funny :)  It is clear that he understands our displeasure, as he normally gets a very sour face the moment he hears us correct him.

Having experience with a child on the autism spectrum, I'm not confident he's there.  There are some things that I see, but many that I do not.  He may very well be a child with some sort of intellectual disability and global developmental delays.  At each doctor's appointment, we are happily surprised.  His neurological work up was overall positive, another blessing.  He will be monitored, but his external hydrocephalus has done what it is supposed to do, which was recede around age 2.

We are waiting on several rounds of blood work, stool tests, and urine samples.  Some of these were done weeks ago but we have not yet received results.  We are also waiting on a developmental evaluation which will permit us to construct Joshua's IEP and receive therapy.  Finally, we're considering an educational placement for Joshua, but it must be contingent on his attachment to us.  Right now, he certainly prefers us but will still go off with obliging strangers!  This is not a surprise, but we don't want to put him in a school/therapy environment if this disrupts his ability to attach.

In terms of attachment, though, we are QUITE attached to him!

He had a haircut.  We chose to do it at home, because we feared he would be VERY  unhappy.  We were right!

Poor little guy!  The saddest we've seen him, except for his blood test :(

He's just so precious to us.  Thank for everyone who prayed for him and for us and continues to follow our story.  Redemption is beautiful.

Thursday, January 3, 2013

One month home.

If you're still reading our blog, it's certainly not to follow our adoption process, because that is over!  It must be because you're interested in seeing how our little boy is doing and how our family is adjusting.

Joshua has been home just over a month (I'm late by a few days).  Obviously, coming home during the holiday season can be stressful for any family, and so we haven't scheduled all of the doctor and therapy appointments we might have otherwise.

Physically, Joshua has gained at least a pound since being in our care.  This was after he gained more than seven pounds since we received his original medical information in February.  And this is because of the care he received from his Baba and the improving conditions in Pleven.  (Note I said improving, not improved.  It is an evolving process).  In fact, he is (barely) on the growth chart now!  His diaper rash, which was the worst I've seen, improved within days of him being home with us from being changed regularly and using high quality diaper rash cream. I saw what they used in Pleven.  It is not their fault, but when the diaper rash cream streams out of the tube much like white colored water, chances are it won't be a terribly effective barrier cream.  I also know his Baba changed him more frequently, but when diapers are at a premium and there are so many children, it is obvious why they wait in dirty diapers so long.

Joshua eats.  Oh, how he eats.  We feed him generally 4-5 times per day.  He doesn't request to be fed, but when he sees me beginning to prepare a meal, he gets very excited. It is hard to keep him safe around hot food when he is constantly at my feet, doing what we call the 'food hum'.  Since he's non-verbal, he sometimes hums (or mimics the intonation of what we are saying).  The 'food hum' is one I only hear when I am preparing a meal for him, a rhythmic, three beat hum.  We are teaching him the sign for "eat".

His diet is still very limited.  We have experimented with foods and have had mixed results.  Josh appears to chew, though not effectively.  He knows how to use a spoon, but is so messy with it that sometimes I have to discourage him from feeding himself.  We've had great success with a mixture of mashed potatoes and crushed up sweet potatoes.  He eats this often and really loves it.  Puddings, fortified with additional calories, are also good.  We've modified soups to be more like what we had in the orphanage, using broths and small noodles and breaking up 2 pieces of whole wheat bread into the broth.  He has no taste for vegetables.  He enjoys overcooked spaghetti noodles in mild red sauces and applesauce with rice cereal.  Yesterday we tried baked beans.  He ate, though not in the quantities he normally does, and then refused the remaining half of the bowl.  He recently tried oven baked potatoes that were soft and seemed to enjoy a few of these as well.  He is eating oatmeal in the mornings, with additional calories added.

Drinking is problematic.  He cannot drink independently and seems to want nothing other than water, and not much water at that.  We try to include applesauce and broths to boost his liquid intake.  He has gone through brief bouts of constipation because of this.

Our visit with the doctors about his eyes was incredibly encouraging.  The reports from Bulgaria were simply inaccurate in many ways.  The risk of his vision being dramatically decreased is gone; in fact, his eyes have been declared structurally correct.  This is in contrast to his medical information, which suggested a pale colored optic nerve, indicative of serious vision impairment.  Instead, his optic nerve is pink and healthy.  He does have strabismus and, though the doctors in Bulgaria didn't believe he had nystagamus, he does.  I suspected this too.  Beyond that, he is very healthy.  We have neurology appointments in a week to determine if there are underlying issues related to his external hydrocephalus.

Behavior-wise, he is exactly what we expected.  Mischievous!!  He knows right from wrong in many cases, as evidenced by the smile he gives us when he tell him 'no'.  It's a different smile from the genuine smile we receive when we come into his room in the morning.  He has learned the gentle concept of "time out", which for him is not the same as it is for our daughter.  We do not leave him or sequester him to a part of the house.  Instead, we sit him in the room with us and explain in very simple, repetitive terms.  "No.  No touch.  No.  No throw."  Over and over we use these words and we can tell he is comprehending them.  When told "No throw" he will often put a toy down.  He is also very friendly and loving.  He enjoys being held and rocked.

Verbally, he is non-verbal.  He mimics the intonation of many things we say.  He was non verbal in Bulgaria too.  However ,he has learned the signs for "more" and "help" and we are working on "eat" and "drink" and "me".  He uses the sign "more" very often when bringing us toys or things he wants.  He still reverts to the 'easier' behavior of crying or dragging someone to an object he wants, but he's making good progress.

An interesting thing is how he reacts when Jon comes home and greets me.  If Jon and I embrace in the kitchen and he sees that, he will run from wherever he is and scream and hit us.  He is sometimes quieted when we pick him up and embrace all together.  For a period of time, even this didn't help.  He was very attached to Jon and if I even patted Jon on the arm, he would get very angry.  Some of this is dissipating.  Generally, when we embrace and he gets upset, we pick him up and put him between us, give him kisses and hugs and then Jon and I will kiss each other or hug each other while he is with us.  We like to show him that we all have love for each other, and just because Daddy and I love each other doesn't mean that we don't love him too.  Interestingly he doesn't seem to care if we kiss, hug, or hold Chelsea. It's only the adults (primary caregivers!).

He is able to sleep in his own bed now.  Co-sleeping did not work for us.  Our bed was too small and after a nasty spill, we realized it was just not possible.  Thankfully, he was able to transition to his own bed easily.  He still does not make much noise when he wakes; a sad reminder of his institutional stay.  But he has begun to "bang" a little bit on his crib to alert us.  Of course, we come as soon as possible so he knows that when he cries out, we will be there for him.

He smiles and blows kisses.  He seems to know when we are with him and looks for us, though he will just as easily go with others at this point.  This gives him the impression that he is friendly (and he certainly is!) but also that he does not yet truly "prefer" us and know that we are his Mommy and Daddy, provider of all of his needs.  His eye contact is poor and we have concerns (which we had in Bulgaria also) that he may end up with a diagnosis of autism.  However, he demonstrates some very good skills that give us hope.

Love is not enough in adoption.  It is not enough to love a child when you adopt them.  LOVE IS NOT ENOUGH!  No, children don't "just need love".  They need stability, commitment, resources, and many other things.  PATIENCE, oh dear heavens, patience!  But it is doable and worth it.  He is definitely worth it and overall, after exiting his orphanage just over a month ago, doing as well as anyone would hope.