Boken Puzzle, Seeking Imagintive Fix Not another Label

 

Insufficient …. Information about his past

incomplete …. Pieces of your family puzzle

inadequate … records to make a sound decision

abnormal…. “your children are not like other ones I work with”

broken…. The way I physically and emotionally feel trying to go around playing normal like I/we fit in

defiant – the way my son is described as he reaches for the Dr. scope to check it out one too many times

hyperactive- the word used in the same sentence as medication

oppositional- why doesn’t he just listen the first time I tell him no?

impulsive- “He just can’t keep his hands off of things can he? This is going to be a big problem for him in school.”



Violent- the way my child and most will respond when they feel their life is in danger. That is why they survived and 1000s of kids that were in their same circumstances didn’t. To you it might be a flaw, but for them it was their ultimate key to survival.



Trauma- the deep wounds imprinted upon my child’s soul that are still so fresh he relives the event over and over again when something similar brings his traumatic memories back.

Neglect- an equally powerful form of torture to the soul. No touch, no talking, no love, little food.

Disassociate- the lesser of the two evils for how my child with PTSD can respond when threatened. In truth though it is only easier for everyone but him.

Pain- A physical sensation I experience every day that I am now unable to hide because of my gait, that allows others to look at me as less than, or weaker, someone to be pitty, look down upon, take advantage of, manipulate.

Suffering- physical and emotional pain that becomes part of who you are, we are and will become for better or worse.

Exclusion- the way one feels when their abnormalities are the focus of other’s labels

Isolation- what becomes of those of us who are ignored because our label isn’t “normal.”



These are all labels that I feel have been screamed out loudly at our family today and yesterday, and whispered for much longer. These labels make our differences less awkward for the person doing the categorizing. Labels that allow others to narrow their perception of us, rather than open their hearts and minds to the challenge of doing something different to help guide the suffering or lost to a better safer place.

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It all started with the needs of this "civilized" world that we live in. John and I often joke around that this is the top of our civilized game. We are not good at conforming, or just doing things because everyone else is. For the most part this is good for our boys who are different, or for me who is labeled as broken, or John as scattered, or Emerson as impulsive or Isaac who is damaged. We don't feel the need to live life rigidly, nor bound by a set of arbitrary rules because they work for all of the “normal” families of suburbia.



But, alas right now we are choosing to go the civilized root because we feel it is what is best for our children. Stability, predictability, and family. Alabama society says that our boys need a complete round of a wide variety of vaccines before they start Kindergarten. For Emerson, this is not such a big deal. We have great records from his time in Kazakhstan. We had very understanding doctors in Oregon that recognized that an 11 lb. 9 month old needs to be on a different shot schedule than one who was on the charts, and he was up to date on everything but two shots.



Isaac on the other hand is much more complicated. We know nothing of his first few months. His Chinese records from several orphanages are full of holes, inconsistencies, and possible inaccuracies. Then he came to the US, seen by a variety of doctors under the care of a different family. Then he came to our family and to the pediatrician yesterday with labels like, SPD, PTSD, RAD, incomplete, missing, inadequate, unknown, unable...



This alone hurt for so many reasons, but I think the biggest was that I was questioned for quite a while about both boys from the Doctor who already had the long list of unknowns from my written paperwork. We had not seen this person before so he was trying to "learn" about them. Again, I came in without the boys a few days ago and answered all of these questions in writing. As I would describe something, he would cut me off, herd my words into a tidy corner, and write down a simple word/label, then push the conversation to the next blank on his form.



Fortunately or unfortunately modern pediatric conventional medicine does not come with a blank for Post-Traumatic Stress Disorder for five year olds. When I mentioned this about Isaac, I could see his smirk, and a new label attached to me. This is when I should have just left, because his next question was "what does PTSD look like for a 5 year old?" When I started to explain he cut me off and said, "so he panics with water, hunger and restraint. Sounds like a typical five year old." Remember folks, I parent two five year olds, only one I have mentioned PTSD. To have this downplayed by a doctor who does not know me or my child was beyond infuriating. What we live through is real hard stuff, and the last thing I need is to be mocked by an overpaid drug pusher.



Eventually we get to the real reason I am at the conventional doctor: vaccines and the much needed Blue Card to start kindergarten. The wonderful adoption friendly sensitive doctor does not do them at her clinic or else we would be there. Emerson's records are complete, he needs 2 shots. Isaac's are too difficult to interpret and he does not want to give him vaccines or run titers until he is able to get more information. This was probably the only good decision made on Isaac's behalf yesterday. At that point I ask the Dr. if there is somewhere else that Isaac can go while Emerson gets his shots. I explain that it will be very stressful for him to have to sit and watch. "No" was all he said.



I then ask the nurse. "Oh we don't do that sort of thing." Just before the nurse comes in I see that the exam room across the hall is empty. The Dr. is sitting in the hallway working on his lap top. I am about to just sit Isaac in that room while Emerson gets his shots, and the Dr. says this is not an option, because they just “don't have the personnel to babysit a child.” Again, I am not sure why I did not just walk out at this point. Maybe it is because I forgot how children who are getting shots are treated.



They sit Isaac in the corner, lay Emerson down on the table and want me to hold his hands down by his sides. Remember I am broken according to my label. This time I am glad to use it and I explain that I can't physically restrain him. So now they have the personnel for two nurses lay on Emerson while a third gives him his shots. Isaac slips ungracefully into his past in the corner, but now as a bystander of the restraint that causes a trigger to his PTSD (which I had mentioned as a trigger to the Dr. 20 minutes prior). As I look over to his corner, he is raging, thrashing against the wall, rocking, wailing, sobbing, inconsolable as he watches helpless, a forced witness to one of his biggest fears on his beloved brother.



The shots are over and Emerson is all done crying, but Isaac has only started. I can't get near him, he is not really there, he is somewhere else, but at the same time he is fighting for his life, and trying to put together how or why this is happening to his brother who is not part of that past. The nurses look at him and me and ask flippantly, "Why is he crying so hard, he did not even get a shot." For once I am speechless. I just needed to go, because words are too complicated for these people who want to gloss over the hard stuff, who don’t want to know what the world has done to children like mine.



I have to carry Isaac out, but he is not holding on because I was part of the violators, the restrainers. It is a long walk to the car. Unlike most trauma flashbacks for Isaac, restraint incidences do not fade once we change settings. For instance, water can trigger a trauma response, but once we leave the pool area, end the bath or put on dry clothes it is over, flipped off like a switch and he cannot even access the memory of the event.



This was not the case yesterday. He sobbed all the way home with a look of sheer terror in his eyes. His brother held his hand in the car and told him over and over again how much his whole family loves him and that he was Ok now. Once, home I managed to get him to fall asleep, but he did so, still whimpering as he finally dozed off in his bed. When I went to check on him 20 minutes later he was gone. Now it was my turn to start panicking. I could not find him anywhere. Finally after looking for 20 minutes I found him curled in the corner of his closest hiding for nap time. My heart split open, with my own rage, sadness, and anguish pouring out for my little boy. With all parenting there are unknowns, but this feels like too much for me at the time. I want to bring the Doctor over and say, “This is what PTSD looks like for a 5 year old. Atypical enough for you to wipe that smirk off of your face?”



When they get up I take them to their first Karate class. Both boys are excited. Isaac does wonderful in class, both with directions, and physically. It is now time for me to worry about Emerson. He must be reminded several 100 times to "sit like a black belt." He struggles with the moves. But, and this is a big but, the teacher never lost patience, never spoke in a different tone, no other student laughed when Emerson could not jump with both feet from square to square. It felt good to have my boys treated as equals, with high expectations, and yet to know that the instructors were looking for better than before.



We left in good spirits, and then were off to a friend’s birthday party. The party went well. Emerson focused on more electronic games with friends while Isaac focused on physical activities by himself. All was going well until it was time to go. When I told Isaac we needed to go, he ran away from me and was getting ready to charge into two people playing a game. I grabbed him to pull him back. Big mistake on my part. This normal parenting move was all it took to push him right back into trauma mode. He became violent. Kicking, clawing, and wrapping his hands around my neck. Once again I could not be near him. I had to clear the area like I would if a child was having a seizer. He needed to get rid of some of his angst before I could try to remove him from the situation. What is terrifying for me is looking into his eyes and not seeing him, but a creature that is primal, fighting for their life. This was not a tantrum. Finally he is worn down enough that I can pick him up and take him outside. He calms some, I

can get him in the car, but then the sobs start, he is banging his head as hard as he can against the car seat, I am holding on but barely. It takes us 20 minutes to get home and the crying never subsides. When I look back at him his frown his deep and the tears poor out and he cries out like a wounded animal.



Where do we go from here? Today he is doing great. He has been polite, extra courteous to me, extra helpful, almost working too hard to please, like he knows I need a break from his pain. How unfair for a five year old to negotiate such flaws of human nature and human rights. How do I tell him that I was wrong not to demand on his behalf, or refuse on his behalf? Now how do I deal with him upcoming need for vaccines knowing the traumatic reaction it will trigger. I want to shake the Dr. and scream, "What is wrong with you! Do you have any idea the level of pain and suffering you subjected my son due to your lack of imagination!" I want to scream at the school and say at what cost do you want your precious Blue Card? How much should I break my child's spirit before we have conformed enough for you to try and educate him?



I went into the appointment to try and play nice with the rules that have been set up for the norm, naively believing that my little family of four could be part of the norm. Now, once again I need to shout from the mountain tops the alternate labels for my family, educate those who leach large sums of money from our measly bank accounts about who we really are, if they would just take the time to listen, and imagine an different way forward.



Insufficient = puzzle pieces to discover

incomplete = mysterious

inadequate = how can I fill you up?

abnormal= unique

broken= looking for a mender, does things differently, adapts to life well despite

defiant= questioning

hyperactive = spirited, energetic, endurance

oppositional= problem solver, kinesthetic, creative

impulsive= willing to take risk, I am pretty sure most Nobel Peace prize winners would get this label.

violent= strong, survivor, fighting for what is right

trauma= victim, unjust, human rights violation, adults gone wrong

neglect= needs time to make up for loss, needs back parenting, needs adults to be present

disassociate= finding a happy place, finding peace in a stressful situation

pain= feelings, a symptom of something that needs to be mended or corrected

suffering= needs comfort and security, predictability, trust, consistency

exclusion= Find a community of acceptance

isolation= needs a loving family and unconditional love for no one deserves to be abandoned once, let alone again and again by those who are asked to play the role of healer.