Cleft Lip / Palate Support Group
Cleft is a congenital deformity caused by a failure in facial development during gestation. It can be treated with surgery shortly after birth with highly successful results. Cleft occurs in somewhere between one in 600 and one in 800 births. Cleft occurs in several severities and is divided in two major categories: cleft lip and cleft palate.
So, I've been wanting to look into being a psychologist of some sort working with crano-facial teams. I figured it would be work I could enjoy, do well, and be able to fill a need. I remember once when I was a kid having a routine checkup with the team, and there was a psychologist who attempted to get me to answer some questions. My answers were like the surly teenager to their parents coming home from school: "fine" "not bad", "etc". As little detail as possible. For some reason I didn't want to talk to this person at all.
My own face with implied personal experience would probably help me gain rappoir with a cleft kid moreso, but I think I've realized why I didn't want to talk to him in the first place and I think it's still an obstacle that would need addressing. The reason is I associated talking to a head shrinker with having something wrong with you, and I resented the implication. It wasn't even so much Why should trust this total stranger? as Why do we need to have this conversation? Whatever issues I had that I've later come to identify as causes of lingering difficulty, I didn't think of as problems at the time. I had my own methods for compensating, mostly involving escaping into the inner world imaging possible video games or math problems or cartoon shows or science fiction.
So I've been wondering, how as psychologist would you be able to help a child that doesn't think they have problems at the time, but later in life might feel they've been robbed of certain familial or social sources of confidence? I realize my experience might be quite different from others, here. I was rarely confronted with open teasing, although there was a constant feeling of being set apart, oddness or inferiority. But even as I describe this, now, it shows my tendency to downplay it, to view it as "normal".
It seems to me a good place to start would be with the topic of surgery and medical development itself, since that's the obvious reason everyone would be gathered there. And the topics of discussion on this forum show that it is a real subject of interest for us, all the way from just going through them, sometimes stressing about and seeing how they turn about to making choices about which procedure, which doctor would be best, even how it will be paid for.
So I think my first goal if I was a psychologist would be to start with the subject of surgery. I think there was a tendency for me to have a blind faith in the process, that it would all have a storybook ending. One could prepare the patient for possible rude awakenings in the future from this notion. Discuss how it's a imperfect world according to our expectations (although everything is perfectly what it is) with an inherent streak of randomness. However, with the randomness comes freedom to create and innovate. I'm sure some sort of games or building toys could be a fun way to discuss this in a hands-on manner.
And, then, another big concern for cleft patients is the social concerns, being ostracized and the like. I'd say the methods to deal with this are somewhat separate, but could be enhanced through the sense of self-identity discussed above. Now the birth defect is not simply something to be fixed and tolerated, but a symbol of something a bit more neat and life-affirming.
My own face with implied personal experience would probably help me gain rappoir with a cleft kid moreso, but I think I've realized why I didn't want to talk to him in the first place and I think it's still an obstacle that would need addressing. The reason is I associated talking to a head shrinker with having something wrong with you, and I resented the implication. It wasn't even so much Why should trust this total stranger? as Why do we need to have this conversation? Whatever issues I had that I've later come to identify as causes of lingering difficulty, I didn't think of as problems at the time. I had my own methods for compensating, mostly involving escaping into the inner world imaging possible video games or math problems or cartoon shows or science fiction.
So I've been wondering, how as psychologist would you be able to help a child that doesn't think they have problems at the time, but later in life might feel they've been robbed of certain familial or social sources of confidence? I realize my experience might be quite different from others, here. I was rarely confronted with open teasing, although there was a constant feeling of being set apart, oddness or inferiority. But even as I describe this, now, it shows my tendency to downplay it, to view it as "normal".
It seems to me a good place to start would be with the topic of surgery and medical development itself, since that's the obvious reason everyone would be gathered there. And the topics of discussion on this forum show that it is a real subject of interest for us, all the way from just going through them, sometimes stressing about and seeing how they turn about to making choices about which procedure, which doctor would be best, even how it will be paid for.
So I think my first goal if I was a psychologist would be to start with the subject of surgery. I think there was a tendency for me to have a blind faith in the process, that it would all have a storybook ending. One could prepare the patient for possible rude awakenings in the future from this notion. Discuss how it's a imperfect world according to our expectations (although everything is perfectly what it is) with an inherent streak of randomness. However, with the randomness comes freedom to create and innovate. I'm sure some sort of games or building toys could be a fun way to discuss this in a hands-on manner.
And, then, another big concern for cleft patients is the social concerns, being ostracized and the like. I'd say the methods to deal with this are somewhat separate, but could be enhanced through the sense of self-identity discussed above. Now the birth defect is not simply something to be fixed and tolerated, but a symbol of something a bit more neat and life-affirming.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
It is extremely important that you do not let go and get dragged downstream. Try to be confident and open, do not isolate!
I often watch the cleftless people and see the beauty on those who seem to be friendly, happy, confident, open etc. And vice verse: those who are too shy, rude, quiet, too proud I tend to think as less attractive regardless their physical appearance influencing too much. It really matters what you are inside, not just outside, if you want to have a long relationship with someone. If you want to have just one night hits and fun, then appearance is almost everything.
The main demon of the cleft is in our own heads. We think it is everything, but it is not nor it should not be everything. How can some square inches of wrongness or difference be a bulls eye that ruins everything. You need to start the battle and the battle is against yourself. Be the winner of that battle, one round by round! If you feel bad, feel bad some time and then rise again and go. This feels often like an endless circle, but when you grow older you may find new ways how to deal with it.
Can you share a link for the healing stuff?
Cheers x
I've reaped a ton of benefit by speaking with a professional. It took a while before I spoke of my surgeries and other things. Mostly mine listened. It's a great thing (a gift) to be able to share anything with someone and then get a professional opinion.
A few weeks ago I was visiting with a friend. She has adopted a child with a cleft lip and palate. I was sharing about an upcoming surgery. The little girl sat silent by me as her mother asked some questions. Very sweetly and gently this little girl looked at me and asked if I got afraid. I looked at her and said " I get afraid every time" That's all she wanted to know. Later her mother wrote me and said what a help it was.
In my old age, I'm fairly bold.
Recently I was paying for something at a store and they asked my name. I always spell it out, I'm used to people not hearing my name correctly over the phone. The woman looked up at me and kind of grinned, a slight smirk. I gently educated her that because I had a speech impediment due to having a cleft lip and palate I was used to making sure people got my name right.
About 6 people turned around when I said this. No one looked strange at me. It was actually a nice moment.
My surgery was not on my face, but I might have a very small fistula, When I came out of surgery one nurse kind of laughed. She said, " they sent you to recovery with some gauze in your nose. Again the loud mouth pipes up. " oh, I have a cleft palate, I let them know I was concerned about being intubated with a small fistula." I figure, I was made this way, may as well use it for the best purposes that I can possible think of. The nurses kind of went Oooh.
I can't begin to tell you how helpful this group has been, even though I come on here rather sporadically. I KNOW it is here, that there are people here who get it, that I'm not alone in my cleft-relater experiences.
On another note: Miller23: if you are having thoughts like "your gonna kill her or rape her," then I hope you are in or will soon get therapy. Those are seriously violent thoughts, even if they don't seem too serious at the time they occur.
I still have one suggestion to everybody: please, love and trust yourselves, go on and try, show your best sides and features, take blows in your face and rise again, try again, find the happy treasures of life that are waiting for you. It is possible. Do not fall in self pitying for good. There are billions of people in this world, you need only one of them to approve you and have perhaps a wonderful relationship and a family. It may consume more energy, but still do not quit trying.
Life is not easy, but it is same for everybody. Rich, beautiful, famous people may look happy, but many have problems with alchohol, drugs, emptiness in life, even suicide.
Merry Xmas!
When I was visiting my older brother in Houston last week, he was sharing some old family stories with me. Many years ago, when he hit a particularly bad period in his life, he entered therapy. He told me that, in a very vulnerable spot, he shared this with my parents, and they were disappointed because their understanding of therapy was only about learning to hate one's parents. So if my parents had this attitude with my brother, who was really struggling in his marriage, then imagine what my mom must have thought about someone trying to suggest there might be something more wrong with me than my facial defect. Her children were supposed to be perfect; so yea, if any mental health professional services were offered, I'm sure she declined it. But it's nice to see a social worker is now part of the team at the clinic where I was treated.
Until last winter, I had worked as a hospice chaplain for seven years. It was not too unusual for a patient and/or their family to decline chaplain support and we did not take it personally, nor did we impose. We were still considered part of the clinical team who discussed each case every other week, although we were not seeing the patient and/or family. Sometimes other team members needed the support of the chaplain when dealing with difficult cases, and for that, we were honored to provide support to our peers. And sometimes, as the patient and/or family got to know the rest of the team, one of them would see an open door opportunity to suggest again that chaplain support was available if anyone would like it. And many times this worked, even though they initially declined this kind of help.
I think the same goes in working with a team who treats those with cleft palates/lips; you may have a kid/family who declines mental health services initially, but once they get to know the team, and as situations arise, the other team members may be able to get you in the door, so to speak. So for the rebellious teenager who prefers to see themselves as not needing anyone else poking (figuratively) into their heads, it might not be unusual for them to initially brush off a psychologist or social worker; but at least you've (or the team) has planted the option of that support in their head for the time when they might realize it's not such a bad idea.
So, I say go for it. I think you'd make a great advocate!