2 PANS kids fighting lyme and coinfections, our journey to healing

More on neurodevelopment healing (Brain Balance)

He slapped me hard across the face, not once, not twice but 3 times, my optional child. Yes, I do mean optional, not oppositional which he also is of course and those reasons have been discussed here multiple times. I say optional because, as I am reminded by many people he is adopted. They then follow that logic with “would we still have adopted him if we knew?” to which we have to respond, A: A bio child can have problems would you give him back then? B: He was a baby no one had any idea he was going to be off the charts intellectually with limited social skills and C: would you dislike your child if they turned out to be different than your expectations? – anyway that’s a discussion for another day. The fact is we made a decision to adopt and by doing so we chose to complete multiple interviews, financial and psychological evaluations and various other scrutiny in order to earn the honor of calling him our son, and we did it knowing that no child is perfect, biological or not. We were more than prepared to have faith that what should be, would be.

Yet in a cruel twist of fate it turns out he never wanted it, there are days he actually hates us for it. He makes if clear every single day that this is not his plan for his life, this is ours and he is being dragged along behind us. In some ways I suppose this is true, adults simply acting in the best interests of a child. Making decisions for the best. So it comes down to this, trying to make the best decisions I can, there I am standing in the front office at Brain Balance taking smack after smack. I want to cry, but I don’t, that inevitably will come later. I really want to just drop him flat on the floor and walk away, but I don’t. I want to walk out the door and just keep walking. As tired as he is – I am too, fed up, over it, done, but I stand there because as his parent and the grown up de jour, I am more than aware that it is my job to give him the time, the space and the reassurance he needs to move through one more challenge. It is my job to stay composed regardless of the fact that inside my heart breaks for him and me. I am painfully aware of all the eyes focused our way. I am embarrassed, broken. Adopted or not, we are more alike than anyone really sees. I paste on a fake smile and start a conversation with someone I know in the waiting room, nonchalant exterior ensuring my inside turmoil is always undetectable. Later I am all cried out, I even cried all through our Costco shop and back home again.

I am torn, as much as his behavior perplexes and drives me to find answers and some kind of peace, I also want people to see this is nothing to pity us for, we have a plan most of the time and we CAN handle him. We love him more than life and if this was a physical handicap I would be no less driven to help him. This isn’t as visible so therefore I conclude it is harder to find understanding.  I just want others to see what we see, to recognize that he and other children like him are mostly anxious and scared kids who need compassion and understanding not physical admonishment and discipline, but I know from the looks we get, and often the comments, I should not expect that any time soon. This is a big part of my quest for answers, my desire to reconcile the person he could be with the person he currently is.

Coming home he is quiet, apologizing every so often, telling me he loves me, joking with me. I joke back, allowing us both space to move forward, inside another piece of my heart broke right off, my mind wanders off topic as I wonder how many pieces are left. I wonder if there is operation that can tape it all back.

The reason behind today’s outburst was an appointment/evaluation at a Brain Balance center. The first part took about 30 minutes and involved reading, math and comprehension. It was all too much for him. It just plain irritates him to do those types of tests as he knows that he should get all the answers, but he just can’t do it fast enough or in the time he feels it should take  He will then turn his anger on the tester. Truly at that time he despises the woman asking the questions.

While I am consoling him later I wonder why do I make him do these things? Why don’t I just let him be, accept him for who he is right now? Why do I keep going for one more try? Mostly I think that I know his potential is far greater than his current achievements, and I worry that unless we give him the tools to balance his intense logical side with some much needed empathy and tolerance, he will always be working harder than he needs to  just to stay still.

I want him to find happiness and contentment – inside! So I keep promising myself that I am done but someone will tell me about something, or I will read an article and off we go again. I am always keeping my ears open for one more thing it seems. WHY? It’s not just for him, it’s for all of us, I want my family back. I want a happier home, I want vacations without intense explanations and apologies. I want to go to the supermarket without having something thrown at me, I want play dates where my son doesn’t threaten another child or get angry because someone breathed wrong in his direction, I want to have dinner with friends without our son being so hyper or inappropriate that people stare at him and wonder. I guess mostly I want to be a little invisible for a while.

We are supposed to go back on Wednesday to Brain Balance for the physical/sensory testing. It’s a formality as far as I am concerned, I already think I know how his brain operates, high functioning left brain, not quite so caught up right brain. I have been reading a lot about brain plasticity and neurological exercises to change patterns and pathways in the brain. I can see how this imbalance shows in his inability to control himself, his anger and anxiety rampant, those centers always on and his immune system kept in overdrive. The retraining work is physically and mentally hard and gets more intense before progress is really seen, but I have heard good things about following a regime geared toward this. On a side note, I am not sure if the $$ required for the therapy will work for us. It’s once again a hefty price tag, which if we see massive improvements in his behavior are totally worth it but if not… Of course even if failure is at the end of the 12 weeks, we will already have signed up. Committed to the financial obligation before we see any improvement or benefit which increasingly is something I am finding harder to do, it is getting harder to take that chance. Having been disappointed so many times before it’s hard to think about starting anything substantial again.

So here is my question to those of you who have walked this path before – Brain Balance, yes/no, maybe? Tried it? Saw huge improvement and was totally worth spending the money, or another waste of valuable resources? I would love to hear what other people think of this facility or this type of regimen. Please post a comment with your experiences.

2 Responses to “More on neurodevelopment healing (Brain Balance)”

  1. Ry says:

    Not entirely sure if this means anything since I am a current employee of a Brain Balance center, BUT I would like to say, that as I work with more and more children, I have yet to see a child NOT improve in some capacity. After 9 sessions we start to see improvement here and I’d love to here how your center is operating.

    Which one did you head to?

    • It does, any information we can get is always helpful. We decided after much deliberation that it was certainly worth a try. So we begin session 1 on Friday this week. I will of course post as we progress. I guess our fear is more that we will see no success at all, and our hope is wearing thin on all modalities. We are just wanting one of these programs to work the way we are promised going in, how wonderful would that be?

      Any information you feel like sharing is always welcome here. Thanks for responding.

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