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Hats Off for Cleft Palates

In the spirit of keeping with my theme of thanks giving in this season of gratitude, I would like to tip my hat to the deep learning that I have gained from sharing my life with a child with a cleft palate and just a few snippets of what that involves from a positive perspective.

cleft 3 months

That kiddo is busy writing her graduation paper for college on the stigma of cleft palates. She will have two opportunities to get it “right” or she will have to retake the class in order to graduate. I am sure she will “blow their socks off” but I am not sure she will get it all “right” and be able to graduate.

So here I go with my attempt at the top 5 lessons I am learning – are in progress.

Learning about prejudice and stigmas
I truly believed that we were just learning about a medical condition that involved a number of surgeries for repair. I have experienced a number of surgeries in my lifetime and knew a great deal about being in the hospital; I thought I would be great at this part of the experience. I was wrong.
For 70% of folks with cleft palates, besides the varying degrees of facial openness (overt stigma) there is the problem of where the lesion in the brain corresponding to the external site might be located, and what functioning that might interfere with in learning and behaviors(covert stigma).

I cannot tell you all the people who thought they might “catch” it.
All the people who thought we were amazing to undertake this project – What a choice we made and were to be commended.
Because she is adopted and Asian heritage, all the people who thought we were stupid and brought on all our financial needs ourselves. How awful it was to bring another disfigured child into the US. Did we know that we could get the eyes fixed also and then beauty could be restored?
And how much the school system would ignore this child until they discovered we were middle class, white parents. She will just mature out of those behaviors.

The joy of breath
The snoring was amazing at night! Her sisters thought they were alone in listening to the rattle and snort produced by this small babe. They were mistaken because for nearly 8 years of her life, every night we turned on the monitor at the head of the bed to listen to breathing, snoring, gasping, and choking. The last would bring us from a sound sleep and send us speeding downstairs to suction out and clear the airways yet another time. Oh! The nights where the breath was a patient in and out rhythm, it was a lullaby of contentment and gently nurtured us though the refreshment of our bodies and the depth of our being.

Becoming an advocate
I just never realized that I was capable of harnessing anger into such a useable, forceful tool – and “speak softly and carry a big stick.” I knew I held powerful beliefs and values, but I did not know that I could use them in such a meaningful way. There is not an insurance company in the United States of America that will pay for any part of Cleft Palate repair. You have to keep locating money, and more money, and more money; begging for services not included but absolutely necessary. You and your doctors must learn to lie, and then raise your shields when you are found out.
You must realize that the credit union, bank, and friends all know why you are coming to see them and most will attempt to keep the curtains closed and pretend they are not home.

Cleft palates are not a disability that is worthy of news time or glamorous enough for public sympathies.

You find yourself teaching every salesperson you encounter and every customer service rep. is going to get information and knowledge that they did not know of before.

You did not know you could get 11 other folks to make depositions about how an insurance company treated their children, and withstand all that intimidation; getting them removed from being able to practice their trade within the boundaries of your state.

You are your child’s only advocate and you must learn how and teach them how to be their own advocate before you let go.

How the brain works in real life
Her lesion is in the pre-frontal cortex, when information is transported to long term memory some of it cannot be retrieved – it is as though it never happened. If you have a chapter math test every month, by the time the end of the month rolls around you cannot remember learning the information in the first part of the chapter and for most of your life you think everyone is just playing a rather mean joke on you. If you are lucky, you can memorize everything the night before the test and get 100% on the rules and rote answers.

We were a working research lab of attempting to figure out what was going on and how to assist the brain in retrieving the information. Then by the time of the teen years, there were brain scans, with different colored patterns of brain waves and computer tests which could pinpoint more information, followed by speech pathologists who figured out how to work this new information and get the systems up and running. Of course this all costs money, unless you are a doctor with a research study grant. Parents need not apply.

You have to have thick skin and develop lots of ideas and programs on your own. Because you wish your child well – and well, you are their advocate and teacher. Most every therapist and doctor you meet will think you are lying and that you need a rest, some assistance, a different medication or program, and finally psychiatric help – because you are the problem.

Prayer
I thought I understood prayer and have been a practitioner of many kinds of prayer all of my life. I have studied prayer and written papers in graduate school about prayer, but let me tell you I really did not know anything about prayer. My daughter has the ability to hyper-focus, do deep bliss, nirvana -touching meditation at a moment’s notice, and she can actively make it happen even in the middle of a tennis match. The first time I witnessed it she was about 5 and sitting at the baby grand piano, and playing a Mozart etude which had been learned the day before at her lesson. She was in deep peace and she paid the etude 11 times, each with a different variation/ interpretation that was being produced from deep inside and pouring out into the room and I just was wrapped in the sound and could not move.

I hope to experience that kind of prayer at least once in my lifetime.

cleft 5 months

I hope you will share a lesson learned that you are grateful for so we may all find a moment of thanksgiving in your words. Thank you for reading this post.

14 Responses to “Hats Off for Cleft Palates”

  1. Dot Says:

    That’s a powerful story and a sad commentary on our decaying health system. Thank you for educating us on cleft palate. The only other information I’ve seen has been in charity literature and on a TV show about doctors working for free on cleft palates in developing countries. (But not here at home, I gather.)

    Your suggestion for comments brings up such an important subject for me that I’m going to make it a post on my blog.

    Dots last blog post..Veterans Day 2008

  2. Patricia Says:

    Hello Dot,
    Oh I am excited that you discovered something you want to write about on your blog…I will be looking forward to that writing.

    There is lots, but not enough, money raised and volunteer medical personnel for overseas efforts – no money is raised to assist in the US. We were advised to sue, get divorced and I go on public assistance in a separate residence, or just foster our child. We chose to borrow against the house and from a friend. The good news of that is that we were able to pursue our own treatment options and explore the learning areas as well!

  3. Vered - MomGrind Says:

    What a powerful, inspiring post, Patricia. Thank you for making me think. I didn’t know any of this up until I read this article.

  4. Patricia Says:

    Vered,
    Thank you…I have lots more! but I am sad because my special pictures did not arrive until this afternoon…hopefully my techie can add them later? I hope so…they are very positive…I am still working on getting positive about Oppositional Defiance Disorder – I know I will be grateful, but not yet!

  5. Dot Says:

    I have it lined up for next Thursday, the 20th, if I’m brave enough to publish it. You’re very brave to be so honest.

    Dots last blog post..Thank You, Deeper Issues Readers!

  6. Patricia Says:

    I will look forward to your post, though I will be on the train all day and night on the 20th so look for my check in on the 21..sorry I will not be there for the grand opening! but I will do my best

  7. Kelly@SHE-POWER Says:

    Patricia, what an amazing article. Thank you so much for sharing this with us. I have heard of a cleft palate, but had no idea there was any kind of brain lesions to go with it. Your story is sad, hopeful, heart warming and joyful all at the same time. I wish your daughter all the best with her graduation papers.

    Kelly :)

  8. Patricia Says:

    Kelly,
    Thank you for making a comment on my site and Congrats on being NSNBOTW on Barbara’s blog.

    Graduation paper was turned in yesterday so we have our fingers crossed and eyes heavenward, and she is off to learn how to do job interviews today – at a Luncheon!

    The University of Washington just posted it’s first research on Cleft Palate brain lesions 6 years ago so most folks don’t have a clue, but I think if people can get insurance help/educational help early on then we can build better self-esteem/self-worth all the way along and not have so many folks who can’t afford all the medical and learning specialties to have a great life/opportunities with out all the self medication of alcohol/drugs/ and low paying jobs.

    I am hoping learning about this will help get insurance companies or national health care to cover costs and not bankrupt individuals. I am hoping that our house (next week post) and my blog income can pay the bills for us :)

    Thank you for coming by.

  9. Jannie Says:

    I hope you will keep us updated on your daughter’s paper?

    Jannies last blog post..Why Thursdays rule

  10. Patricia Says:

    Jannie,
    You betcha! Thank you for asking

  11. Jess Sanders Says:

    Patricia, what a deeply heartfelt story you’ve shared – I am always amazed (and thankful) for your lack of reservation when you share your journeys with us. I especially loved “You are your child’s only advocate and you must learn how and teach them how to be their own advocate before you let go.” How true, for any parent and their child but especially for a pair that has to understand, accept, overcome and teach about a difference that mainstream society does not understand.

    Jess Sanderss last blog post..The rules have changed: How will your organization evolve as Millenials enter the workforce?

  12. Patricia Says:

    Jess Sanders,
    Thank you for your comments on this post. I truly believe that the word needs to get out that this is an area that insurance companies and schools do not understand and that parents truly feel isolated and conflicted. It is time for me to tell these stories and share the information and hopefully defeat some of the stigma associated with this opportunity life has offered up.

    I only wish I had been able to blog during the earlier years, but maybe that will happen now and assist others in their journey.

    I truly appreciate your comments – thank you

  13. Cricket Says:

    Wow…what a special post. I agree with you that most of us are lacking in the knowledge about this subject. Actually the word “subject” is a understatement. It is so hard sometimes for others to know what goes on behind closed doors. Especially when dealing with a child with some form of sickness or disorder. I am so glad you shared this experience. I have a neighbor whose child is 3. She has spoken with me about this before. Her son was born with a cleft palate and she struggles with tiredness, etc. I really need to reach out to her more.

    Thank you so much for sharing this.

    Crickets last blog post..Breathe in, breathe out

  14. Patricia Says:

    Cricket,
    Welcome and thank you for your comment. I have now discovered you and will come and read your post.

    Yes, cleft palate kids are very tiring for parents – at three I hope they have a speech therapist ( depending on where you live most schools will provide st for free once the kids are 3 yrs. – tell them to think about how stroke patients input information!)

    One thing that would be helpful is to have you write a letter to your state senators letting them know that there is still no insurance coverage for CP repairs or educational needs – so when your neighbor is too tired to advocate someone else can shoulder that task. Information and reminders are power tools.

    Let me know if I can do anything for them…even just to listen – I’m here