When we brought Katie home, we fielded numerous questions, many times the same questions over and over again.
But one evening last summer, after telling Katie’s story to an area Down syndrome support group, I was asked a question that caught me off guard.
“How do you process the grief and anger at what was done to her?”
For many reasons that I didn’t examine until later, grief and anger just weren’t there.
Tommy does not have cerebral palsy.
The wonderful physical therapist who traveled with me in January was sure of that on the first day she worked with him. It was confirmed by Dr. Strauss within the first few minutes of Tommy’s appointment with him, and also by the Shriner’s doctors.
So what are Tommy’s issues?
Tommy’s DEXA scan results showed that his bone density is -8.6 on the bell curve. Any score of -2 or below is considered osteoporosis. [Katie’s score was -15 in January of 2012 and -5 one year and four IV treatments later.] X-rays of Tommy’s bones revealed some new bone forming, which we were grateful to see. He’s benefiting from better treatment during the last year before we brought him home–several months of vitamin D and regular weight-bearing as well as somewhat better nutrition. After his DEXA results confirmed what we suspected, we began supplementation with vitamin D and calcium and administered his first IV treatment to increase his bone density.
All Tommy’s parasite testing came back negative. Given his past history as well as the timing and details of his symptoms once we brought him home, Dr. Strauss explained he’s most likely dealing with something called atrophic gut.
Also known as starvation.
It is a condition in which the extensive lining of the intestinal tract has atrophied, or flattened out, and is unable to sufficiently absorb nutrients. Tommy was okay while we were feeding him commercial baby food, but once we were home and increasing the quality of his nutrition via real, protein-rich foods, supplements, and special formula, his body showed us that it couldn’t handle it. Dr. Strauss explained that it’s not the quantity, but the quality of the food that is unable to be absorbed due to the damage done.
We’ve backed way off on the quality of his nutrition until we get some further direction. Our big question, of course, is whether the lining can re-grow after being so hurt for so long.
Tommy’s scoliosis is not as severe as we had thought–when he sits up straight, as he occasionally does. The theory is that his curvature was most likely caused by lying in his preferred position for so many years, then being put into a sitting position without having developed the core strength to keep from slouching.
Tommy at age eleven~
His malformed feet have no orthopedic issues and were most likely caused, again, by lifelong abnormal positioning due to total neglect.
Tommy’s mouth is a disaster area. All his teeth are adult teeth, and most of them are rotted. All that’s left of some of them is brown stumps below the surface of his gums. Against Tommy’s better judgment, I attempted to brush his teeth one time during our week in his country before bringing him home. It caused such profuse bleeding that I didn’t try it again until Dr. Strauss put him on a low dose of antibiotics. This allows me to brush his teeth a bit more safely, as it will help to lower the risk of a blood infection caused by the putrid bacteria present in his mouth. [It doesn’t lower the risk of an all-out battle to see who’s stronger, Tommy or his mommy. He’s slowly resigning himself to the process, though!] Our family dentist, who has taken care of our family’s teeth since Joseph was a baby and is refusing to charge us for Tommy and Katie’s care, has stated that Tommy will need at least two procedures under anesthesia, the first one simply to clean them so we can see what’s what in there. He’s hopeful that a dental surgeon he knows will treat Tommy at low or no cost, and we’re waiting to hear back from him about that possibility.
Tommy has a high palatal arch, caused most likely by his low muscle tone failing to keep his tongue in the proper position while his mouth was forming in utero. This is identical to what happens to babies with Down syndrome in utero.
His severe tongue thrust can be explained by what has to be one of the worst ways of feeding a child with low muscle tone–years upon years of being fed flat on the back from a propped bottle with a large hole cut in the nipple. Just like Katie, he didn’t even close his mouth around the nipple or use his hands to hold the bottle. He only had to gulp to keep up as it poured in.
Initial auditory testing showed that Tommy has moderate hearing loss. This also didn’t surprise me. If I speak to him in a normal tone from across the room when his back is turned to me, he shows no sign of hearing me. We’re planning a sedated ABR hearing test for him at DuPont the same day that Katie receives 4-6 year ear tubes and has a tear duct stent re-placed. Once we have an accurate idea of what he’s hearing, we can decide on the best plan of action.
His EEG revealed, as we had guessed it would, that he was not having seizures and he is now weaned off of his seizure medication.
The EEG also showed that his brain is significantly underdeveloped, essentially like a baby’s, due to being deprived for so many years of the necessary nutrients and stimulation it needed in order to develop and make connections, stimulation like speech, face-to-face interaction, and the countless experiences of life from birth to age sixteen that we take for granted.
His brain was badly hurt.
Another mom writing about the son she adopted from Pleven–
“For one, he still doesn’t talk. This used to be my field and I have some questions as to whether or not he’ll ever be able to fully develop speech because that part of his brain wasn’t used during the critical, formative years. Many of the Pleven children never heard enough speech to develop speech or learn how to make the 44 sounds of the English language. I think about the famous psychological case of Genie (also profound neglect), who was chained up in her bedroom throughout her entire childhood. Our children [were] basically raised in a Skinner box. D—- now has a handful of one-syllable words and sounds, as well as some sign language. With those tools, he is able to communicate many of his needs. He understands much, much more, so the ability to nod and shake his head also helps. Interestingly, he wants very much to communicate and is extremely expressive non-verbally, so it is not for lack of trying or motivation.”
Tommy is extremely intellectually delayed. He hasn’t yet received his full psychological assessment, but from all we have seen in the past two months, he is under a year old cognitively.
However, he does not show signs of autism. Autism and cognitive delay are not the same thing. The difference between the two was startlingly apparent as I sat at the table in Tommy’s little classroom in the orphanage. One child had a significant level of autism, but was obviously bright. Learning will most likely happen quickly once this child has adjusted to home and family. Another child showed no autism at all, but cognitively was probably under a six month old level at age seventeen. Both such precious little people!
The more we learn about Tommy, the more it looks like his original disability was low muscle tone in conjunction with some chromosomal irregularity or other that would have caused some developmental delays similar to Down syndrome.
Almost all of Tommy’s medical problems can be explained by low muscle tone plus fifteen years of severe neglect and underfeeding.
Some of his issues can be explained by the neglect alone.
In many ways, Tommy acts just like Benjamin–no self-awareness, inhibitions or sense of dignity whatsoever, very little impulse control, lies on his back shrieking and waving his arms and legs when he’s excited, gags at any texture in his food, drools, has an irresistibly vulnerable sweetness about him, and the list goes on.
BUT he’s bigger, heavier, and stiffer, his diapers are much stinkier, he shows no awareness of others’ emotions, he’s more easily distracted, more easily over-stimulated, much slower to learn, has a much shorter attention span…
In the photo below, he may appear to be a typical child focusing on the picture on this flash card, but we can’t detect any evidence that he recognizes two-dimensional objects. I had to tap on the card to get him to look, captured his extremely brief glance at it, and praised him enthusiastically! “Good job looking, Tommy!”
…and is much, much louder! It is almost as if he got stuck at a baby level when his baby needs weren’t met.
In addition to all these things, Tommy has several habits from the extremely long-term, unusually drastic, institutional-style neglect he suffered. What children with special needs come up with to fill empty and lonely minutes and hours and days and months and years is pitiful and heart-breaking to witness.
So many times unexpected hot tears have come to my eyes. Sudden fierce grief and anger has risen within me at the dignity that was stripped from him, the potential that was stolen from his life. He is clueless as an infant to so much of the world around him. He is oblivious to his own vulnerability to the scorn of others.
I grieve for him because he cannot do it for himself.
I’ve stuffed it away without examining it, and kept moving.
The pain in my heart for Tommy has softened over the weeks.
But I wouldn’t be able to count how many times I’ve gazed into his face and wondered.
Who would Tommy have been, what would he be able to enjoy learning and knowing and seeing and doing if he had not had so much stolen from him?
He has no idea how to play appropriately with toys. He completely missed that part of his childhood. Without hand over hand assistance, he either shakes, taps, or drops toys to see whether they make noise.
If he likes a toy, he’ll hold it up high, look at it, shake it, and shriek.
If he doesn’t like a toy, he’ll drop it.
There is so much that Tommy didn’t receive as a baby that it would be impossible to think of it all.
It’s easier to list what he did get, because that is a very short list, indeed.
What he didn’t get is all the more painfully obvious to me as I care for him alongside Benjamin.
One small and surface-level example–
Ben tries to make eye contact with us when he wants our attention. He begins to vocalize more and more as he gets sleepy, and if we don’t respond to his more polite requests, he eventually cries. We meet most of his needs before he even has to ask for them, and we always respond gently and affectionately when he does ask. Even if we know he’s just being cranky, we tell him reassuringly, “It’s okay, Ben! You’re okay!”
When Tommy was a tiny baby like Benjamin, he asked, too, just like Ben asks.
But nobody responded.
If he was sad, nobody responded.
If he was cold, nobody responded.
If he was lonely, nobody responded.
If he was hungry, nobody responded.
If he was hurting, nobody responded.
If he had a dirty diaper, nobody responded.
If he was just feeling fussy, nobody responded.
Before too long, baby Tommy stopped asking. For sixteen years, there was no point in asking for anything.
~Because Tommy was in his orphanage for sixteen years, seven years longer than Katie was…
Think about that again.
What have you experienced in life since the summer of 1997?
Tommy laid in bed experiencing nothingness for most of those years. The last few years he received a baba for two hours on Tuesday and two hours on Thursday, with breaks over holidays and during the whole month of August. The simple fact that a pitiful four hours a week of affection could save a child’s life should break our hearts and move us to action.
~Because he’s sixteen and possibly past the best opportunity for significant physical growth…
~Because his situation improved before we brought him home, so that he had a better starting place than Katie did when we brought her home…
~Because he may have had at least one condition left untreated due to medical neglect that could have impacted his growth…
~And because his current damaged condition doesn’t allow him to absorb nutrients well…
Because of all these things and more, Tommy might not show a lot of growth from here on out.
Typically, when a child is loved and cared for, the older they grow, the more they progress.
Tommy was so hurt for such a long time, that instead of progressing more as time went by, the opposite happened. The older he grew, the more potential he lost. The more unlikely it became that he would recover from the harm that was done to him.
Tommy at age twelve weighing eighteen pounds, before receiving his baba~
His progress in all areas might be infinitesimally small.
And do you know what?
There are no words to describe how okay that is with us.
Our son is a survivor who was greatly sinned-against through no fault of his own. We adopted him without condition and have accepted him without condition. We aren’t waiting for him to change before he’s good enough for us. We have compassion on him and love him the way he is.
Keep that in mind as I describe the everyday reality of caring for Tommy.
So what is it like?
The hardest part is the shrieking.
Verity’s sensitive ears and Tommy’s loud, high-pitched shrieking do not mix well. She will melt down over and over again and stop eating, playing, or learning if he is shrieking in her general vicinity. We’ve had to get creative, like choreographing a dance, with where Tommy and Verity are in relation to one another at any given time if he is likely to shriek.
We’ve learned to turn him away from steam rising from pots on the stove, vacuum cleaners, water bottles, long, thin items like pencils, fly swatters, and brooms, anything that makes him over-excited and brings on the ear-piercing shrieks. If I am feeding him and have to walk away, and Verity is in the room, I’ll ask one of the children to sit with him for a few minutes and hold his hands and encourage him to calm down until I come back.
We’re thankful for our large property, since the great outdoors soaks up some of the sound.
We’re thankful for our play room. [That’s where we have a roomy ball pit for Tommy, Katie, and Verity.]
We have to be sensitive to others when we’re in public, try to keep him calm when necessary, and not assume the shrieking is okay with the people around us. We’ve discovered that we know a lot of gracious people!
The next most challenging part of Tommy’s care is that he has a small appetite and is a very picky eater. It’s a balancing act to come up with food that is healthy, counters the bowel looseness, and still tastes acceptable enough to him (bland and sweet!) that he doesn’t flat-out refuse to eat it. He doesn’t like most common flavors, such as peanut butter. While we were still in his country, we learned a little trick to encourage him to open up for us, or we might have had to consider a feeding tube. We have to do a lot of coaxing, it’s a messy process because of the low tone/tongue thrust/drool situation, it usually takes about an hour to feed him, he makes terrible grimaces and gags audibly while eating sometimes, especially when trying to fill his diaper at the same time (like Ben does!) but…! We are so thankful he eats!!
We often put sweatpants on him to keep him from diaper digging and keep his legs warmer since they’re thin and rather inactive. They’re also considerably easier to put onto him and have a more comfortable waistband for him than jeans.
Tommy is getting stronger, more energetic, more curious and motivated to move, more engaged in his environment, more vocal, more expressive of his emotions, opinions, and preferences.
He now asks.
He reaches out for affection and interaction.
He can still retreat into his orphanage survival passivity, but it is becoming more rare.
A few of his other orphanage habits are becoming more rare.
He has gained a modicum of understanding regarding the meaning of the word “no,” and another modicum of impulse control. We think his baba may have teased with him and made a game out of his attempts to grab everything, because he would go into peals of giggles when I’d move his hand away and tell him, “no.” I tell him “no,” with a neutral expression on my face and in my voice, over and over again, until he stops reaching for the item. He still automatically reaches for anything within his range that interests him, but now seems to expect me to respond and will take his hand away more readily, sometimes without giggling, and will wait much longer before attempting to grab it again. We’ve learned to scan his surroundings for items he shouldn’t have, like doors that he will grab onto and bang over and over again, bowls full of food that he would grab and fling to the floor, or other people’s earrings! We put couch pillows around the floor lamp so he can’t pull it over. We brought our play yard out of storage to make a safe play space for him when and where it’s necessary.
We expose him to a variety of sensory experiences.
When he’s sitting, he can swivel himself in a circle but not much else. If he wants to move, he’ll go from sitting to lying down and then scoot along the floor fairly quickly on his back. Recently, when on his back, he’s much more likely to go over to his side and try hard to pull himself up to a sitting position, especially when attempting to grab something that’s up just out of his reach.
He still initially resists bearing weight on his feet, but eventually resigns himself to it. I have him stand a little every day until he shows he’s wearing out by getting shaky. He lasts longer now than he did a month ago.
He no longer needs the adaptive bath seat for support. He has learned to splash in the bath!
Funny guy makes me smile!
If you were meeting Tommy for the first time, we would interpret him for you so that you could feel more comfortable interacting with him.
We would tell you that to understand Tommy, you have to understand that he is like a little baby. Don’t be intimidated by his odd noises and behaviors or thrown off by the fact that he looks like a five-year-old.
He won’t comprehend most if not all of what you’re saying, and may not even hear you. He might be distracted by something else that’s going on and seem to ignore you. Don’t let that put you off. He might reach out to grab for your hat or necklace or other loose objects. He understands an affectionate teasing tone and likes baby games like peek-a-boo. He can tell who likes him and who doesn’t, and your persistent friendliness will eventually be rewarded by a million-dollar smile!
When we first brought him home to our other children, we told them not to be afraid to interact with him as if he was a baby. We can love on him to our hearts’ content. The fact that he is totally dependent on us for his physical care and the fact that he doesn’t object to eye contact and physical closeness are both helping with the ongoing bonding process.
Tommy is sweet all the way through.
When we kiss him out of range of his breath, he even smells sweet like any of our other little ones.
He loves to go for stroller rides.
He loves it when we sing as a family.
He loves to swing on our big, new swing set.
He loves to play in the bath.
He loves it when we are silly with him!
Tommy was not the victim of hate. He was unloved, yes, but the opposite of love is not hate, it’s selfishness. He was immeasurably hurt by apathy and self-interest.
“I am obviously worth more than you are, so my needs are more important than yours. Too bad for you.”
Tommy may not be our biological child, but he was just as tailor-made for our family as any of our other children. Not only that, but in a very real sense, he is our own flesh…
“Is this not the fast that I have chosen:
To loose the bonds of wickedness,
To undo the heavy burdens,
To let the oppressed go free,
And that you break every yoke?
Is it not to share your bread with the hungry,
And that you bring to your house the poor who are cast out;
When you see the naked, that you cover him,
And not hide yourself from your own flesh?”
Our own flesh and blood.
“And He has made from one blood every nation of men to dwell on all the face of the earth…”
Our own flesh and blood was disowned and left at an orphanage when he was four months old and it became obvious that he wasn’t meeting his milestones.
Our own flesh and blood was considered to be an ugly, inferior, worthless burden by those who should have cared for him.
Our own flesh and blood survived extreme mistreatment for fifteen years.
Our own flesh and blood flinches, cowers, and shields his head with his arms if we move suddenly close to his head. We’re told by those with experience that he will eventually stop doing that.
Our own flesh and blood is finally home with us where he belongs, and fits right in with the rest of our barrel of monkeys.
I grieve for Tommy’s loss because he cannot grieve for himself.
But I also rejoice on his behalf for what God has done for him.
Bless the Lord, O my soul;
all my inmost being, praise his holy name.
Bless the Lord, O my soul,
and forget not all his benefits—
who redeems your life from the pit
and crowns you with love and compassion.”
And the rejoicing is greater than the grieving.