I had emailed the Philadelphia program as well as ordered the dvd on Amplified Pain Disorder. I was so impressed with the fact that one of their psychologists called back the very next business day. I talked to her about how the kids know which pain in the future to dismiss and which not to dismiss. She said a good rule of thumb is if we are unsure to go have her medically checked out and if there seems to be an issue, it can be addressed and if nothing is found, it can be assumed to be related to RND. Now having had a daughter who spent a year being told nothing was wrong with her and yet all the while she was having problems with appendicitis and endrimetriosis, I appreciate that this formula may not always work, but I appreciated something concrete to help assess a situation rather than just a general assumption that we will just always know when it is RND related.
I also talked to this psychologist generally about how acknowledging someone's pain hinders them from healing. I gave an example of saying something like, "I can see that really hurts right now, but I know you can get through this. Just one more repetition. You can do it!" and then asked her to tell me how that is wrong. She said she would say something similar, without using the word 'pain' (replace pain with discomfort or challenging), but that my example is fine to say. I said but no one is allowed to acknowledge Zoralei's tears. She explained that the one thing she has seen after 8 1/2 years in the program in Philadelphia is that too much focus on the pain keeps the child locked in the pain and delays the healing. She assumes that this program does not verbally acknowledge the challenge Zoralei is having because they are trying to make sure there is no focus on the pain aspect at all. I do not entirely understand this as she is sobbing, so obviously Zoralei is very focused on the pain. I understand they desire to focus on her success to achieve a better time or more repetitions, of finding a way to achieve that in spite of her pain. After all, after a year of pain last time, Zoralei grew very depressed and though we tried to encourage going out with friends (I would plan them and make her go) or working on homework, anything to take her mind off the endometriosis, Zoralei struggled to do those things and the more hindered by her pain she was, the more depressed she became. In this round of pain, I have a great appreciation for keeping her from letting the pain control her. I agree with it and appreciate that this program is designed to help my child to find the strength to do that, but I still do not see how it is wrong to verbally, even briefly, acknowledge the person seems to be in pain.
With all the pain Zoralei has endured the past couple of years, I saw the damage that was done by doctors telling her last year's pain episode was all in her head, because it was not possible to medically have the conditions surgery eventually showed she had. And now she is in a place where they know she is pain, but do not want any acknowledgement that she has it. We dance around the word pain even. Does using a different word for something make it seem different than it is? I wonder if we called it what it was and just taught that pain does not limit her. Would that be enough or does the mere associations made by the word pain encourage a more limiting response? It is the politically correct terminology necessary? Is avoiding any validation of the child's struggles essential to the program's success? I wonder if their goals could be achieved by validating her experience without compromising her need to push past the pain.
I do not know, but when I listen to these things as a parent, I immediately start questioning all that I am doing. Do I coddle too much? If I ask her how her day was is that too close to the pain issue? If I offer an arm up after she trips and falls on the floor, am I taking away her independence? If I am upset to hear my daughter cries 11 times in a day and does not get a single hug or 'I'm sorry that was pretty painful,' am I too overprotective? If I allowed her to tell me she cried so many times in one day and all I respond with is "that sounds rough. What movie do you want to watch?" am I hurting her emotionally or going too far for the parameters of the program? It is strange, especially when you are naturally not the coddling type, to suddenly question any normal response to any given situation as one where you are handicapping your child. It makes it hard to feel like I can just be the mother, that at age 15, she still needs. To love, to hug without worry. The first night I visited her, we watched a movie together. The last 10 minutes, I invited her for a little cuddle on the couch with me. We did not do anything that we would not do normally and we didn't cuddle for long, but even that small act as her mother had me asking my husband if I had done something against the program.
I understand parents who if their child says their arm hurts would clean their room, fetch their water, and generally just wait on their child hand and fist or would not have them do their exercises because it hurt. I am not that person. I will do the wall squats along with you, even compete to outdo you if that inspires you. I am not a big hugger but if you were crying, I would give you a hug and listen to you explain why. Depending on the issue, I would most likely hand you a box of tissue, give you my 'did you consider the other side' spiel, and tell you go take care of the problem. I am a very independent person who is not a big toucher and so I expect much the same from my kids. But some of them are more like their father. A hug can give them strength to succeed. A validating statement helps them feel heard and understood, even if they know they need to do better. A cuddle on the couch is what they do with all their friends and so it is not considered some kind of preferential treatment. What is normal is no longer clear cut and I hate feeling like I am unsure how to just love her without hindering the program's objectives and without our relationship becoming emotionally estranged.
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