Sunday, August 31, 2008

Artificial Sex

Why not just call it what it is? Then maybe it won't sound so great. The joke used to be, "Well, I have 2 siblings so my folks only had sex 3 times, right?" Welcome to the 21st century folks! Now we can have all the kids we want with no sex and all the sex we want with no kids...more on this later, it's one of my favorite soapboxes (I'll give you a hint - it has everything to do with the three words "what we want").

Wednesday, August 27, 2008

Who *is* this kid?!

I've been writing about our struggles with Philip and Ruth and thought it was time to sound off our latest great success. JT is our eldest son (younger than only Miriam who is much younger developmentally) and he came to us at 2 months of age. He was a ball of frenetic energy even at that young age - bouncing up and down, up and down, up and down...for the next 11 years. By the time he was 4 or so we were at wit's end with his energy level and mood swings and that's when we discovered the Feingold program. That helped him for years - particularly the removal of corn syrup and high fructose corn syrup from his diet. As he got a bit older we found that even a small amount of corn syrup would cause screaming, raging fits. He would beat himself on the head, scream, foam at the mouth and tell us over and over again that we should just kill him now. It was bad. Very bad.

It evened out for a time and then grew worse again. About 3 years ago we started discussing meds and finally went that route in addition to following the Feingold program strictly. He eventually worked his way up to 100mg of Strattera a day - a liberal adult dosage for a 9 year old. The Strattera helped tremendously but we found that it was a delicate balance. If he went without it for even a couple of hours his old behaviors and moods would return.

JT's pediatrician was willing to prescribe the medication but urged us to find a good counselor as well. It took about a year of calling around, hemming, hawing and then finally deciding we just can't live on pins and needles anymore before we bit the bullet and traveled 40 minutes away to a fantastic (but pricey) counselor. For about a year and a half the counselor worked with JT - and with us - to get him to feel like part of the family, to get in touch with the fact that he was detached, lonely and angry. Early on JT was diagnosed with Reactive Attachment Disorder (in his case caused by an emotionally distant birthmother during pregnancy). His moods would get better and then worse...some days much worse. One day I went into his bedroom to find him sitting on his bed with a rope around his neck. After that, any time he got angry and stormed off I fretted about going to look for him, afraid of what I would find. Somehow, even through all of his trials and the many, many battles, JT has had my heart tightly strapped to his. I have never had to struggle to love him or show him my love and his behavior was slowly killing both of us.

But day by day JT has been emerging from the chaos within him. Changing churches was an important first step. Then this past summer he saw a dream realized. He has always wanted to play travel soccer but was never permitted to because of Tad's ministry schedule. With the family schedule freed up quite a bit he was allowed to try out for the team - but didn't make it. He was invited by the coach to come to a practice after which he was asked to practice regularly with the team and play with the team as a guest. He didn't have his dream handed to him. He's had to work his butt off to get there. Every practice he has to go out there and prove that he can be a member of the team. And it's been the best thing for him ever. Now he's on the soccer field 6 or 7 days a week and keeping his eye on his goal of becoming a professional ball player.

With the help of his counselor he's been able to realize that he is an important part of the family and he does belong here. He's been willing to let his parents be in charge of his life. He's learned to trust, to open up and to relax. Two and a half weeks ago he took his last dose of medication. He's been without it ever since. Every day he is able to try new foods, moving into the second stage of the Feingold program which most kids reach after just 6 weeks - he is now reaching after 8 years.

And the beauty of it is that even with all of these helps lifting he is doing better than ever. I don't know how many times the past few days I've asked myself, "Who *is* this kid?!" Yesterday he played basketball with me and his sibs - all of us against him and he won 10-8. But, more importantly, he *enjoyed* the game. I've noticed him pulling his younger brothers into his lap and playing with them or just snuggling. He was on John Michael's soccer field last week trying to coach him from the sidelines. Even Betsy and Miriam have been the recipients of his recent beneficence. It's funny sometimes to watch. He really wants to engage with his siblings now but he's never really done it before without all the venom and fear so his attempts are awkward and sometimes strange but oh so wonderful for this momma's heart! He's even begun to thank me for little things I do for him - unprompted! He's smiling a lot more and trying to maintain eye contact when he talks with others. Situations which at one point would have caused a week's worth of angst he now blows off quickly and is able to move on. Every morning I pray for my children...Lord have mercy on JT....and lately I've simply been thanking God for his mercy, for if this isn't His mercy on JT then I don't know mercy looks like. God, in His great mercy (for He is good and loves mankind!) has seen fit to watch over JT and heal his deeply troubled heart. Miracles do still happen, folks!

Wednesday, August 20, 2008

For He is good and loves mankind...

I just noticed last night how many times this phrase turns up in Orthodox prayers. Do you think the church fathers are trying to tell us something?!

Tuesday, August 19, 2008

What we see...Part I

Today I got a comment from Gina which read in part:

In future posts, please write about how those of us who might encounter children and parents like yours at church, in stores, etc., can understand what we see.

I don't really know how to answer that. I don't understand what I see when I look at my children and explaining it to others is even more difficult and frustrating. Just this past Sunday yet another person turned to me and said, "I don't understand. I just can't see Ruth doing anything that bad - she's so sweet." The comment was made because the adults were having a meeting, the children were playing in the gym and Ruth was sitting in a chair in the corner. I think she thought I had put Ruth in time out in the chair. In reality, Ruth had been so inappropriate ( in small barely perceptible to others but significant to Ruth ways) all morning that I did not want her playing with the other children out of my sight. So I asked her to stay in the room where the adults were. She sat herself in the chair in the corner, stared off into space and did not move the entire time, even when I tried to get her attention so that she could come sit next to me. Nope, not bad, just weird - and, trust me, it gets much weirder than that if we let those small inappropriate behaviors go on unfettered.

So, sorry Gina, I can't directly answer your question. But I did figure I could give some pointers on maybe what to do or not do that would put families like ours and those who share their lives with us, at ease a bit. So here is the first installment of my advice to others.

Please don't....

...argue or comment about how we treat our children. Chances are, even if discipline seems too harsh or firm for an infraction, the behaviors are targeted behaviors that are part of a broader behavior plan. On the flip side, we may choose not to exact any consequences even when the behavior seems out of control if that particular behavior is not currently being targeted. I'll give you an example.

Philip is having a lot of trouble with poor sportsmanship. It is part of his disability to want to win at everything and place blame when things don't go his way (autism is a very self-focused condition). He will cry, yell or sometimes just mutter under his breath. He will pout and throw small tantrums. He will blame others for his mistakes or accuse others of cheating. At these times, our 11 yo son looks very much like a 3 year old which isn't so good for someone who desperately wants to fit in with his peers. It is usually his brothers who take the brunt of this. We put a plan into effect to help him with this behavior which was important to us because Philip does desperately want to make friends with his peers. Sports is a great way to level the intellectual and social playing field and nobody wants to play with a poor sport. His "friends" were beginning to get frustrated with him.

So, our goals for this particular behavior plan are to:

1. "Normalize" Philip's sports-playing behavior as much as possible to help him create bonds with other boys his age.

2. Help him improve his behavior on his own so that he can play in all sorts of "sports" settings unsupervised by his parents (who wants to take Mom everywhere?!).

Here is the plan we implemented to help with this area:

1. We defined a sport as any physical activity with another person (or even on the computer). So basketball, soccer, football, hide and seek, foosball, Sprint car racing computer game, swimming in the neighbor's pool, etc are all sports and fall under this plan.

2. We define poor sportsmanship as crying, pouting, arguing, not following others' directions or rules, insisting on his own rules (which he always makes to his advantage), leaving the game as soon as he appears to be losing, blaming others for his mistakes, accusing others of making mistakes they did not make, calling others' a cheater.

3. Philip is reminded every time he begins the sport that: a) This is a sport b) There will be consequences for poor sportsmanship c) We review the definition of poor sportsmanship.

4. At the time we started this Philip, Ben and JT were taking tennis lessons with our neighbor who plays tennis competitively and all were really enjoying the lessons. The consequence for poor sportsmanship in any "sport" was to lose a tennis lesson.

5. Since Tad and I are trying to reduce the amount of time Philip needs to be supervised in group activities, we commissioned JT and Ben as our eyes and ears. They are to tell us the good, the bad and the ugly so that we can handle Philip's behavior appropriately. (And they do tell us all of the above - they are just as quick to give a good report as a bad one.)

The plan is working well. In fact, it was working remarkably well until Philip made the mistake of giving Ben what-for at a tennis lesson. Apparently neither his instructor (our neighbor) nor our neighbor's girlfriend witnessed this behavior but Ben did and he reported it to me honestly. For this, Philip lost his tennis lesson the next week. We knew our plan was working when Philip had a good cry and pout about losing the lesson, then went about the business of proving to me that he could have good sportsmanship as he interacted throughout the week with the neighborhood children. He still had to serve his consequences.

When Philip didn't show up for the lesson and our neighbor's girlfriend heard the reasoning (unfortunately I was having a baby that day) she also gave Ben what-for. She accused Ben of tattling on Philip and informed him in no uncertain terms that he should have some sympathy for his brother because his brother has disabilities and that Ben should not be trying to get him in trouble all the time. She was not aware of our behavior plan, she was very rude to Ben and she underestimated Philip's abilities (it is specifically because he has disabilities that we are trying to help him overcome them to some extent - his disabilities do not give him free reign to act like a weenie-whiner.) In the process, JT and Ben expressed that they no longer wanted to take tennis lessons if they were going to be criticized for playing their part in Philip's behavior plan. So the tennis lessons have ceased - very sad indeed and came about only because someone did not understand Philip's behavioral goals and criticized our parenting of him. light of this example I can ask you to...

Please do...

....ask us how you can help with our child's current behavioral goals. That question will go a long way and you may have insights into the plan that will help us tremendously. Then I know that I can trust that you understand that you aren't seeing the whole picture and that I can give you a part to play in the behavioral plan, or even hear out suggestions about how to improve the plan.

Parenting these children is a very complicated process. We have a whole team of people involved in their care which includes various doctors, counselors, therapists, parents, friends, grandparents. I am thankful to Gina for bringing up this question and I have long been wondering how to address these questions for the many who love our family and our children and want to interact more freely. I hope this post has been helpful - it is almost impossible to share the depth and complexity of our kids' issues in any way but to invite you to come and immerse yourselves in our home life - so I feel it may fall short. May the Lord have mercy on me as I continue this series and attempt to educate those who desire to share their love with us and become part of our team.

Wednesday, August 13, 2008

He Said he loves me!

I was in the kitchen the other day when Philip ran through and asked if he could go to the neighbors' to play. "Sure," I said. He happily ran out the door and shouted over his shoulder, "I love you Mom!" I stopped what I was doing and looked directly at him. "What did you say?" "I said I love you Mom."

He's never said that to me before. Well, he has but I had to ask him to stop years ago because he would only say it when he was being blatantly manipulative. But this was different. It was a spontaneous expression of his pleasure at being allowed to be just like the other boys for just a moment. It was nothing short of a miracle.

Philip was 2 years and 4 months old when he came to us from Korea. Being an international adoption, it was a long and tedious process to get him here. He had been identified as a child with special needs from the get-go and we were told that besides a cleft lip and palate, he also had a host of other physical issues. He had been extremely delayed in his gross and fine motor function and there was some question about whether he would ever be able to run, play, or keep up with the crowd. He was completely non-verbal which concerned me. Three times before we agreed to bring him home, I asked (a complicated process in itself) if there were cognitive delays and three times I was told unequivocally no. So we were quite prepared to deal with a toddler who may have a life-time of physical challenges to handle. We were not prepared for the child who actually came off that plane.

Philip's walking was very shaky when he got here. He was escorted off the airplane in a stroller since he was not able to walk more than a couple of steps without stumbling over his own feet. He has very poor muscle tone and looked...well, floppy. That, in fact, is the way medical personnel refer to his tone - but this was the part we expected. He was not able to communicate with us at all. Besides the language barrier, he was non-verbal and had never spoken any words, neither Korean nor English. He would simply point and whine for anything that he wanted but he couldn't even seem to figure out what he wanted. He had never been fed anything but formula and he was malnourished.

As the weeks, months, years progressed we realized we had a much larger project on our hands than we had ever anticipated. Philip could not make eye contact with anybody, he had a lot of perseverative behaviors, he threw constant temper tantrums and he remained unable to communicate with the spoken word. He could not follow basic directions and he did not know how to relate to others - he seemed to be in a world of his own and deeply resented those of us who could not crawl into that world and anticipate his needs. To say he was not cognitively delayed was either a blatant lie or gross malpractice.

We have since come to understand a lot more about Philip. He has mild mental retardation, Pervasive Developmental Disorder (I hate this diagnosis - obviously he has pervasive developmental delays - the diagnosis tells us nothing - except that doctors don't like to call autism when they see it), mixed expressive-receptive language disorder (he has trouble understanding and expressing words), dyscalcula and possibly undiagnosed OCD, and ADD. I, for one, did not sign up for this and I believe God knew that had we heard the word Autism before we adopted Philip we probably would have cut the whole thing off before it started. But God wanted us to learn a few things.

The battle has been long, tedious and often marked with bitterness to help Philip get to a place where he is as "normalized" as possible. Now at age 11 he functions about at the level of a 5 or 6 year old yet, since he cannot interpret social cues, he thinks he is functioning on par with his peers. Ironically enough, he is too high functioning to realize how low functioning he is. He is basically a happy child, oblivious to the frustrations he causes to those around him (someday maybe I'll offer my review of The Curious Incident of The Dog In The Night).

The key to what success we have gained in getting Philip to where he can relate to others a bit better has been diet, particularly yogurt, which his father faithfully makes for him and serves to him each day at breakfast. As long as Philip has his yogurt each morning he is able to make good eye contact, keep his perseverations and obsessive behaviors to a minimum and relate better to others in general. In fact, many are surprised to hear that he has autism since, as long as he follows his diet, he does not exhibit many of the classic signs. But we know. We know all too well because we relate to him moment by moment - he is never far from my side and I know his every quirk. I can predict his thoughts and anticipate his responses. His rigidity in thought and emotion are still classic markers of his many underlying problems. So when he turned to me and said just this once, "I love you Mom" I knew I had to grab a hold of those words, the look on his face, the whole wonderfulness of it all and hide it away in my heart. It may be many more years before I hear it again.

Wednesday, August 6, 2008

The Damage Done

Ruth will be 8 in December. Last month marked her 6th year with us and she is starting to make progress. She was born to a 13 year old mother who had been raped at the age of 12 and was sent to live in a foster home. That baby tried to mother her baby for a full year before Ruth was taken from her and placed with our adoption agency for another 6 months before coming to us. I recently unearthed her placement pictures. She was crying and stiff. She was the most unhappy child I ever met. She cried almost constantly for months and then gradually it was less and less each day. Then she turned off completely for years - just drifted away within herself. I felt I would drown if I looked too deeply into her eyes, her nothingness was unbearable.

Slowly, gradually, she is climbing out of her interior chaos. Last month we met with our counselor (thank God for this man!) and we were discussing some really odd behaviors we'd been observing in her. He took notes as we talked and then he sat and looked over his notes and thought and said, "This is a very chaotic person. But at least she is expressing her chaos. What we are seeing is expressive chaos." He made up that term on the spot and he was pleased with the progress. He was pleased that the chaos within her was finally finding expression outside of her. Therapists are odd folk but I allow myself to be carried into his enthusiasm lest I lose heart completely.

Today as we met with our counselor again we talked about how to go about the business of enjoying Ruth's company. Yes, this is an intentional task that requires strategy and planning. We are often asked about our adopted children "Can you love them the same?" And the answer for us with a couple of our children is "No." The bond to our homemade children is instantaneous. It begins at the first inkling of life which is usually indicated by a faint pink line. We then have the next 9 months to fall quickly, madly in love with the life within. Then for me the experience of labor and delivery solidifies that love relationship. I see my labors as a joint effort between me, God and my baby - the culmination of a long, natural process in which love is born. Then we have the re-discovery with each one of all the things a newborn can do and that love relationship becomes rock solid.

Ruth didn't have the benefit of any of this. She was carried in a traumatized womb nestled in a traumatized girl with a traumatized mind and soul. She was parented by a child who probably continued to act out her own sexual confusion on her baby. As her first days, weeks, months went by and her brain began to form and develop connections from one complicated part to another it was short-circuited by sometimes non-existent and at other times foreign and inappropriate stimuli. Her physical development became distorted (she still walks with a slight limp even though there is nothing physically wrong with her). Her ideas of love, safety, joy, nurturing grew up in a manure bed of distortions and her sense of self was cut off from her, hidden in a place deep within her.

She is not able yet to function as a "normal" part of our family. She cannot form meaningful friendships and she may never be able to navigate the difficult maze called marriage. Simple tasks are often impossible for her, my counselor insists that at this point I am her executive functioning. The past six years have been a constant effort to teach her to play, to hug appropriately, to chat, to remember to chew... Much damage has been done to this little one.

I am always amazed at the amount of damage that can be done to a child even while still in the womb. If a mother remains detached and disaffected during pregnancy, chances are even a child placed immediately within a loving, nurturing, stimulating home will have difficulty with bonding and attachment (such is the case with another of our children). If that same child is allowed to develop in those early weeks and months of infancy with the same detached or traumatized mother then the damage deepens. I know children whose lives may be irredeemable barring some miracle of God (further explanation of this topic may be further fodder for another post - I can hear the objections as I type...). They will grow up and become dangerous to society, even though they are now in loving and nurturing homes where all the best of resources (physical and spiritual) are being applied to their care. And all of them were placed in loving families within months of birth. The damage was done.

We are no longer the starry-eyed optimists we once were and when we see those young couples who enter into adoption thinking that their love will be enough we inwardly cringe and outwardly try to offer softened warnings about the turn their lives are about to take. I will never stop believing that God can and may heal Ruth and our other children completely but I also know that we need to realistically assess where we are now. The truth is, God is choosing to heal gradually - moment by agonizing moment. There may be a day on this earth, in this life, when he scoops up Ruth in His hands and blows the dust from her soul and she will emerge whole -- or that day may never come this side of Heaven. Until then I will remain convicted of my task to walk alongside her, guide her, love her and introduce her to the Great Physician, even as I shake my head and marvel at the Damage Done. For as great as the damage is, how much greater will redemption be.