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The Tragedy in Our Story

Iakabos, Hope, Evangelia and Stephen just got home from a monastery retreat this weekend with a group from church. That means that I was home with Jacob, Kyriaki and Christine (and, of course my lovely mom who was helping out!)

We went to the store on Saturday to pick up a few things, and I left Jacob with Grammy for a few minutes in the shampoo aisle so I could go grab packing tape. When I came back what I saw was not surprising, but it was painful.

Jacob was sitting in his wheelchair, with Grammy looking at shampoos behind him, and he had slouched over and zoned out. It’s a particular face he gets when he’s feeling lost or confused about what’s happening around him. I saw that same exact look and posture at the orphanage; he looked like a sad, lost little boy.

Typically Jacob doesn’t go to the store much, because it’s an overwhelming and disorienting experience for him, but he went today. At first he seemed like he was having fun, but near the end it was apparent that this also, was too much.

It grieves me to see him like that. At an orphanage you expect a child to have a lost look on his face, and not just any lost look, but the kind of lost where you have stopped trying to find your place. I expected to see that when I met him… not three and a half years after bringing him home.

And yet, there it is. I stood at the end of the aisle, totally unnoticed by him, and just watched him for a moment. I hoped that maybe his eyes would wander my way and he would see me, and I would smile and he would brighten up. But when Grammy started pushing him back my way and we made eye contact, my smile fell quite flat. He was still lost, even after he’d found me. And that has always been the tragedy in our story.

Visiting at the Orphanage

Brain damage from his life prior to being in our family is the cause of his difficulties. He has three specific kinds of brain damage, the first and only officially diagnosed brain damage is Cerebral palsy. But this physical manifestation of brokenness is the least of his roadblocks.

His staring off, his lost expression, comes from a second type of brain damage, currently just diagnosed as a general “delay”, he presents as a textbook, classical case of Fetal Alcohol Spectrum Disorder (FASD). Because he has no facial features (some kiddos do and some don’t, but it doesn’t mean one case is more or less severe) and we have no history on his birth mother, we have been told it will be all but impossible to officially diagnose.

His unresponsiveness to my presence and sweet disposition is due to a third type of brain damage we call trauma. Jacob has a severe attachment disorder, which develops within the first few years of life due to a traumatic experience or relationship with parents or caregivers. (such as being taken away from a birth mother, abuse, neglect, instability of caregivers, etc.)

Because of the FASD symptoms he processes very slow, as if the world were moving in fast forward all around him. If he isn’t in his normal place and his normal routine, he probably has no idea what is going on. His memory works great, if it’s working. He has all the information stored, but usually can’t access it, especially if he needs it.

It’s sort of like raising a child with dementia, and indeed the brain damage is very similar in both. He has trouble sleeping, and giggles anxiously when he’s nervous or bad things are happening. He is overly compliant and naive, to a point where it would be dangerous to leave him with the wrong kind of people or peer groups.

FASD is real brain damage, but it’s also quite invisible. When most people meet Jacob they comment on how bright he is, how well spoken he is, how much he understands. All the while, he is scripting (repeating phrases he’s heard even though he doesn’t know what they mean) and saying what he thinks the listener wants to hear, whether it’s true or not. Later on he will not be able to tell you what the conversation was about, because he wasn’t comprehending any of it in the first place.

Because kids with FASD can’t always access the truth (memories) in their brains, they just go with the flow and try to look like they’re making sense. It’s a great defense mechanism for kids who are highly verbal and don’t know what’s going on. But it’s also a defense mechanism that greatly backfires.

People who can talk normally are considered to be functioning normally; their ability to communicate hides their disability and makes it all but invisible except to the knowledgeable or close observer. It took us six months of living with Jacob before we realized he had a cognitive delay. Six months. Before then we took his disability for disobedience most of the time. This becomes the lot in life for most children suffering from FASD.

Coupling a disability like FASD with an attachment disorder is the perfect storm for an extremely difficult life. It is hard enough to parent a child with FASD; they typically have little or no understanding of logic or consequences. They don’t make connections, so traditional discipline does nothing except make them feel more frustrated and isolated. Add an attachment disorder, which prevents a child from making deep connections with their caregivers, and how do you begin to reach a child like that?

I know Jacob wants desperately to be loved, but he is also terrified of it. His brain tells him that accepting real love from his parents is a death sentence; if he has a bond with us, he is vulnerable and loses control and we have power over him. The last time an adult had that kind of power over him it was a life threatening experience, so when the opportunity arises again he fights it with every fiber of his being.

He pushes us away valiantly, because deep down he feels that this wall is the only protection he has. Sometimes his wall will come down and we will have genuine moments with our son, or good days that are right and feel the way they should be. But those moments, where he allows us to give him love and affection, come at a great cost. There is always a rage at the end of our rainbow. He will never let us have the last word in the relationship, and later on or the next day we are repaid with defiance, anger, threats and violence.

It’s a physically, emotionally and spiritually exhausting cycle that we have been trying to break for over three years. We have a therapist who is trained in the exact disabilities and disorders that Jacob has, and there has been painstakingly slow progress over the years. But it is not nearly as quick or as effective as we would like.

If anyone ever wonders why we are so protective and guarded with Jacob in public, it’s because his emotional stability is incredibly fragile. Being out of his routine and home is overwhelming enough. Add to that strange adults (he probably doesn’t remember you even if you remember him) who are chatting with him or touching him or giving him attention, which exacerbates his attachment issues? We have a recipe for disaster when we return home.

Yes he is compliant and sweet and appears happy in the moment, but as soon as he feels safe enough to drop that charade (aka back home) the rages will begin, and all the deep-seated grief and anguish he has built up over his short life will come pouring out in harmful, uncontrollable and totally unhelpful ways. Sometimes the backlash lasts for days on end.

We know people want to interact with our children and have relationships with them. I want a relationship with Jacob too. But it’s not about what I or anyone else wants; it’s about doing what’s best for Jacob. Right now we have made enough progress that I can quickly walk by and give Jacob a small kiss on the forehead, or tussle his hair. It’s affection, but it seems like an afterthought; it’s a tiny gesture that doesn’t require any acceptance or response on his part. That’s all he can handle right now. Any more than that and it backfires.

I know it’s painful for grandparents, relatives and friends to feel shut out of Jacob’s life. I get it. I’m in the very same boat. I fight every day to have some kind of loving relationship with my son – and I live with him. If all I can manage as his mother, is a little hair tussle… I imagine it will be a very long time, or perhaps never, that he will be ready for much affection or attention from others.

It’s taken me a long time to work up the courage to write about this. I do so for three reasons. First, I want people to know why our life is the way it is. I know that it can be hard to ask a parent “Why are you being such a weirdo about me talking to your kid?” Of course, no one we know would ever say it that way, but that’s totally what I would think if I were on the other end of it. It’s an awkward place to be in, and maybe if we are more open about this very painful struggle, others will be able to get their questions and concerns addressed with a little more ease.

Second, there are thousands and thousands of parents dealing with the exact same struggle we have. Many adoptive families, and some typical families, will struggle with FASD or attachment disorders or both at once. Even if they are the biological parents – please never, ever judge these families. Even the most responsible and loving parents can end up with children who have difficulties. We live in a broken world.

I write for these families too, because no one wants to talk publicly about their child’s darkest moments. It is isolating and our society has stigmatized parents who have “troubled” children. For several reasons I feel that this isn’t as much of a sacrifice for us as it may be for some families, and someone needs to speak up and break the silence.

We need awareness. We need people to know that invisible disabilities do exist. We need support from our communities to raise our children. We need understanding and not judgment.

And that brings me to my last reason for writing, certain current events in the last few years have taken place where I have seen these disorders likely causing tragedies that affect entire communities, and not just the families involved.

I will write a follow-up post about this, since it really does deserve its own space. But I mention it because it highlights the importance of this discussion. We need awareness and support not just for ourselves and our children, but for our communities as a whole.

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