Comments on: Hats Off for Cleft Palates

By: Patricia

Patricia — Tue, 18 Nov 2008 02:20:13 +0000

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

By: Cricket

Cricket — Mon, 17 Nov 2008 19:25:13 +0000

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

By: Patricia

Patricia — Mon, 17 Nov 2008 01:58:44 +0000

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

By: Jess Sanders

Jess Sanders — Sun, 16 Nov 2008 20:59:12 +0000

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?

By: Patricia

Patricia — Fri, 14 Nov 2008 21:50:30 +0000

Jannie,
You betcha! Thank you for asking

By: Jannie

Jannie — Fri, 14 Nov 2008 20:12:11 +0000

I hope you will keep us updated on your daughter's paper? Jannies last blog post..Why Thursdays rule

By: Patricia

Patricia — Fri, 14 Nov 2008 19:06:39 +0000

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.

By: Kelly@SHE-POWER

Kelly@SHE-POWER — Fri, 14 Nov 2008 04:44:08 +0000

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

By: Patricia

Patricia — Thu, 13 Nov 2008 20:00:33 +0000

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

By: Dot

Dot — Thu, 13 Nov 2008 19:45:23 +0000

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!