Six and one half years ago we drove to a nearby town, got out of the car, and had a pasty white, malnourished, filthy 21-month-old boy named Jackson placed in our arms on a doorstep with a t-shirt, a diaper, and not one other thing to his name. Within a month he was diagnosed as having Reactive Attachment Disorder. It was the beginning of the longest, hardest, most excruciating journey I have ever, or will ever embark on. Not because of him, but with him. A journey that tragically has cost me the love and affection of a couple members of my family (just exactly like our therapist said it would from the beginning which at the time I refused to believe), but has entrenched a deeper well of love and respect from the rest of our families and friends. Make no mistake about it, I will not describe in detail here the things that we have experienced or most especially the details of his life before coming to our family because, quite frankly, it is none of anyone else's business and he doesn't deserve to have it announced to the world. That, and I have found more often than not that others have a tendency to package us up and never allow us to grow and change. Something I do not want for him.
Over the years I have, for the most part, remained silent about Jackson's disorder to everyone that is not close to us. I have had my reasons, and solid ones at that. Yet I have felt for a few months now that it is time for me to find my voice. Why not sooner? Because I have been in the trenches, head down, expending every single ounce of effort and energy I have had to help my son overcome the life he was forced to endure before he came home to where he belonged. It has been very much like I've been in the middle of drowning and someone comes up and asks me what I did to get in that situation. My goal has been to survive, not waste energy explaining. The time for sit-down answers is not when you're focused on survival. It's only when you're safely on the shore that you have the breath to explain. Secondly, because my time and energy have been such precious commodities I chose not to waste my time educating those who only want to judge and never really wanted to understand in the first place, and those who truly have cared have done one thing that all of my critics haven't. They have asked. They have made an effort, understood, and have ended up becoming the pillars of support that we have so desperately needed.
I wish to address in this blog a few things that may help those we come in contact with understand why I do the things I do. First, before reading any further, please take the time to go to The Mayo Clinic and read more about Reactive Attachment Disorder. Here is the link: http://www.mayoclinic.com/health/reactive-attachment-disorder/DS00988 After reading this you may better understand when I say that while Jackson exhibits both inhibitive and disinhibitive behaviors, he leans mostly to the disinhibitive. Although he has come a long, long way, the more anxious he becomes the more he reverts to these disinhibitive behaviors.
The easiest way to explain this is that Jackson has no stop button. Dependent on his emotional state he often exhibits autistic-like symptoms. I am not saying that he is autistic (although he does rank a solid 89 on the Autism Index based on the GARS-2 assessment performed by our neuropsychologist Dr. Sarah Richie, which under normal circumstances would place him as being Autistic). I am saying that like a child with autism he becomes highly over-stimulated by things that would never even register on our radar. (Here is a great link to help explain how the brain functions affect our emotions and vice versa: http://www.wholepsych.com/site/physician-reactivity-temperament.aspx)
When you and I get excited about something or find something extremely funny we can feel our adrenaline start to flow. When it's all said and done we can take a deep breath, say, "Wow! That was fun/hilarious!" and then we find ourselves returning to a normal state of calm. Because of the emotional distress he endured as baby and the constant state of turmoil and fear he lived in he never learned how to bring himself back down once his stress level was up. Whenever he gets over-stimulated, from something bad or good he gets stuck there. Now imagine for a second what it would feel like if something so funny happened that you laughed so hard you cried, but then you couldn't stop. What at first would feel great would soon hurt. Now imagine that something startled you and you were left hanging in that state of alarm. When he is left hanging in this state of high stimulation, either from good or bad, not only is it painful for him, he also has lost his ability to think clearly. Can you imagine what simply playing peek-a-boo feels like to him? Now, let me be very, very clear about what I am about to say. Understanding this lack of ability to regulate himself coupled with his history of abuse and abandoments and it's long-term effects on his ability to interact with others, especially women, motivates every single decision I make involving him. Having been repeatedly abused and abandoned as a baby, can you imagine what it feels like to him when someone who is practically a stranger (including family we only see once every year or so for a day or two because "family" is only beginning to even have meaning to him) begins to try to tussle his hair, or play fight with him, or reach out and poke him in the stomach to play, or wants to cuddle up and read a book with him. He is instantly on high alert. His history has taught him not to trust anyone (It took him four years to trust us, so expecting him to trust anyone else after a few minutes or hours is ludicrous! My own parents were only able to do simple things with him like read a book a year ago!). I know every single signal he has that tells me a situation is going from enjoyable to frightening for him. His pupils dilate, his smile goes from the natural-smiling-with-his-eyes to the smiling-to-survive smile, he begins to stand on his toes, he starts to tremble, his laugh turns from an adorable gut laugh to a "tuh ha!", he starts to talk incessantly and ask off the wall questions, he begins picking at his fingernails, and I can visibly see practically every muscle in his body tense up. All of that for starters. The more signs I see that he is spiraling out of control the sooner I a) pull him in close to me (even with a "smile" on his face his hand is usually balled up into a fist hanging on to my shirt or hand for dear life), b) attempt to remove him from the situation, or c) do both. Not because I wish him to not have fun, and most definitely not because I have to be in control. Because I'm trying to save him anxiety and hurt! Does this mean I never let him do anything fun/exciting/new or engage with anybody other than his immediate family? If it did why would we ever have taken him to Disney World? Or to the beach almost every year? Or signed him up to play soccer? Or flag-football? Or tickle him? Or take him swimming? Or canoeing? Or play baseball or flag-football in the front yard with him? Or any of the normal things a parent does with a child they love? Why not just let him have fun with everyone else regardless and then bring him back down? Because when he is in that state and he has lost his ability to think clearly he ends up hurting himself, and often someone else. Every single time. And that in itself interrupts his ability to return to calm and keeps him in a state of dysregulation for days. It use to be weeks. One of the major things people don't understand: The more they back off and let him have space, the more they allow me to bring him in and calm him down without their interference, the sooner he can go back out and play. What appears to be me not allowing him to have fun or engage with other people is in every actuality my attempt to spare him from hurt and help him find his way back to calm. Easy enough to believe when you're reading this blog, but difficult to believe when you're watching my beautiful boy with a smile as big as Texas on his face doing his best to charm the pants off of whoever he feels most vulnerable with. Something that endlessly paints me as the evil, fun-killing, control-freak Mom who won't let her son do anything fun therefore she must not love him. Again, I know which smile is the real one, and which one is the if-I-act-wonderful-enough-I'll-survive one.
Is he better yet? Yes, he is better. He is light years ahead of where he was. But he isn't well yet. Think about the relativity of time for a minute. Going from three years old to four feels like years. Going from thirty-six to thirty-seven feels like a week. So if going from three to four feels like years, imagine what one month feels like to a baby. In those terms, 21 months must have been eons, and crucial ones at that. His personal history is part of his present and his future. And though my baby who screamed at the sound of music now asks me to dance, he still has so much to reconcile, to sort through, to undo, to let go, to heal from. Jackson currently is chronologically eight, but in every other way, he is very much a four to five-year-old.
Another major thing people don't understand is that how we are in public is nothing like we are at home. Leaving the house consistently puts him in a mild state of stress. Add a trip to that and he is already having trouble maintaining. Throw some well-meaning folks who want to eat him up because he is so adorable in the mix and it is a disaster in the making. I do not doubt for one second that I appear to be an over-bearing, up-tight, child-differentiating freak when we are out. He is in a state of hyper-alertness, therefore I am too. What few see are the sweet, relaxed moments at home. They don't see him crawl in my lap for a story to be read. They didn't see him teach himself how to braid my hair because one of his favorite things to do in the whole world is brush it. They have not seen him go from a child excruciatingly terrified of the water to a child who loves to swim. They were not there to hear the first time he ever laughed a real, distinguishable laugh. They do not know, nor can they comprehend what it is to watch your son sleep, truly relaxed and unafraid for the first time in his life. And they certainly cannot fathom what it is to be holding him in your arms safe and warm, wishing with all of your soul that he had been your baby from the beginning. Weeping for the things you know he endured. Aching to have been there to protect, to comfort, to nourish, to love. Promising that every single day of his life, whether he will accept it or not, to do those things for him now and then doing it in spite of his tenacious rejections of it. They have not felt the despair, and they certainly have not felt the hope and the belief I have in him. They have not witnessed the miracles in his life.
Life caring for my Jackson has very much been like drowning in quicksand and trying to save the both of us. More times than I can count I've had my head pulled under by the weight of despair. More than once I have had my head pushed under by criticism from people I loved dearly and thought I could count on, leaving me in a place with no air, no light, and almost no hope. A place where very much like being in the middle of quicksand I am telling him to be still and hold on tight and everyone else is yelling at him to move. I jumped into a pile of quicksand up to the top of my head to save a child and by the grace of God he has brought both of us out.
I am not a perfect mother and I am the first and loudest to admit it. I make mistakes every single day. But God doesn't require me to be a perfect mother, only to have perfect love. Fortunately, that is the one thing I get right. And those of you who know me best know that when I say I love my children fiercely, ALL of my children fiercely, that I mean it. Do I treat my children differently than each other? Absolutely. Every one of them. Because I know my children as individuals. Because meeting their individual needs requires individualized parenting. Because I want each of them to be better than okay for themselves. I want them to fly. Having said that, I am asking for two things. 1) Help me to help my son. Give him space. Just as you would a child with autism, allow him to come to things on his own, at his own pace, in his own way, calmly. Without trying to touch him. Let him make the first move. If he wants someone to read him a book, he'll ask. If he wants to have someone touch him, he'll reach out. If he wants to participate in any activity, again, he'll ask. And sometimes I may say no. Not because I'm mean. Not because I don't love him, but exactly because I do and want what is best for him. 2) Please, and I do beg this, do not punish my other children for Jackson's disorder. Please don't make them pay for Jackson's inability to handle strangers or for me bringing Jackson in to help him find calm again. The world will never know how much they have sacrificed for their brother, most especially Kail. The world could never know how much they love him. And yet God certainly knew exactly who he would need to be his sisters and brother, who would love him unconditionally. The first two selfless beyond comprehension through it all. The youngest a healer. Please reach out to them.
I am not asking for people to like what I have said, to approve, to understand, to advise, to pity, to show sympathy, and most certainly not to praise. I'm not even asking anyone to take my word for it. Below is a list of individuals who have all but lived in our home, or taught him, or both. They have been around for the long haul. They have witnessed us at our best, and absolutely our worst. And they have all willingly offered to speak with anyone who might have questions.
Darice Spackman 615-477-8964
Thomas and Missy Winterton 435-823-0129
Sherri Robison 731-333-1247
Rebecca Niazi 253-278-9107
Amy Montana 770-359-9867
What I have written may have a bit of defensiveness to it. But when you get kicked in the teeth enough times you learn to be on your guard. Whether anyone will listen to what I have said or not in the long run just doesn't matter. I will keep doing what I know is right for him regardless of what anyone else thinks. There is a reason I call Jackson the son of my heart. What very few know is that at any point in time for two years after he came to us I could have "given him back". His adoption wasn't finalized for two years. I could have taken the easy way out. But I didn't give up on him. I don't. I never will. I love him. I believe in him. I believe in miracles. Every step of progress he has made over the years has been one. I know. Because I have been there. Because I will be there. Because he is my son. Because I carry him in my heart, sometimes kicking and screaming, but still I carry him. He is worth it all.
