Talking

Nicole - posted on 03/19/2009

Hi I am 43 yrs old and was born with a cleft lip and palate. I have had six surgeries the last one when I was 16 yrs old early enough to have my senior picture taken with my new nose. Not alot was changed to anyone else but I noticed. One thing I wish my mom would have done was to take pictures of me I only have two pictures of myself when I was a baby however I was the last of five kids so that played a part in not having a lot of pictures,but I still wish I had some. So take pictures of your beautiful child she will want to see them when she gets older. I had a wonderful child hood I was not treated any different then my brothers and sisters and also by my friends. Lots of them didn't even know about my lip. I thank my mom everyday for all the worries and work she put in to my having a normal life and her answer is always you are my child I will do anything for you!  You have a special child and you are a special mom keep learning new things to help your child and everything will be wonderful!

Haven - posted on 03/19/2009

Since I first started this conversation Madi has started talking more. I call them all her "1st words", as she seems to only say some of the words once. Some of her 1st words are, Hot, Hat, Bye, Mine(I didn't here this,Gamma did), Milk(mil), Oh Oh, Map(ma), Madi(ma). I'm working on the P sound with her. We started with making fish lips, which she mastered right away, now we are trying to build up pressure to make the sound. I have a recorder we use. At first she couldn't blow enough air out to make any sound, so I would plug her nose while she blew. Madi hearing the music she made, made it not a issue that I was plugging her nose. She lets me do this with any exersice I come up with to help her build up pressure by herself. like blowing or sucking a straw. She can now play the recorder all by herself!!! I'm so proud of her!!!

It takes a lot of work, especially on her part, but the rewards are fantastic. Like the great big smile she gives me when she finally does something on her own. :-)

Jody - posted on 03/16/2009

I am 32 years old and was born with a cleft lip and palate, I had my first surgery to repair my Palate when I was ten pounds. Back in the 70's that is what it took, 3 months or ten pounds whatever came first, I have been talking alot to my mom about what she all went through with me and my surgery's, first thing she told me was the doctors told her NO baby talk. for her to talk to my like an adult, and to make sure I wasnt giving any special treatment because of my medical situation.  To this day I still have a small hole in the roof of my mouth. I did have alot of speach thereapy. from a year old until I was in 3 grade. Which my mom said help alot.. I think the sign language is the best way of speach thereapy for you to teach her. One more thing I would love to point out about children born with Clefts is that make sure you tell them they are beautiful everyday.. Because as they get older kids get mean, (Iknow this sounds stupid but I went through all of the name calling). Self Esteem is great for every child but more with children with clefts. My self esteem was really low. Its has taken alot for me to build it back up

Good Luck email me if you need more

jlcarter76@yahoo.com

Thanks

Jody

Haven - posted on 12/14/2008

Thanks for all the encouaging words! I'm still trying to teach more signs to Madi, but I have a harder time learning them than she does! We are still going to speech therapy but her surgen wants her to see a specialist to see if she needs surgery to help her speak. We'll get over that hurdle when we get there. I've also found a really great site called "All the Cool kids have a Cleft Palate". It basically is all about older people (teens-twentys) telling their experiences growing up with a CLP. I recomend you checking it out!

Marsha - posted on 12/12/2008

Speech delays are not uncommon among young children - even without clefts. It sounds like you are doing all the right things. Speech lessons are an important aspect of learning to communicate clearly and the sign language is both immediately helpful and a life skill:) You may find a community baby Sign2Me class, where small groups of little ones with a mix of communication needs can enjoy signing in a low risk, positive environment. Most of these programs are 'mommy and me' sort with parents participating as well. I recently attended a series of classes with my grandson, who at 2 was a delayed talker. Since he did not qualify for special services as he responds and attempts to communicate, the sign classes were a good alternative. I can tell you, that staying positive will really help Madi as she learns to communicate and talk. As a child, I took speech therapy for my cleft lip and palette condition and it was *the best* - as an adult people rarely can tell that I had any problems and my speech is great. Though I will admit occasionally I get some nasal qualities:) I still remember practicing the vowel sounds with my wonderful mom! Your support will mean a lot to Madi as she grows up:))

Dani - posted on 12/10/2008

My daughter Shaylee was also born w/ bilateral lip & pallet she will be 2 in Feb and she uses some signs she can say Mama - Dada - & here. Other than that she just makes noises & stuff. Like you I feel horrible knowing she wants to express herself more. She has been in ST for a lil over a year now & I just continue to be patient & try to work w/ her daily on the simple words. That & Shaylee is a twin & her sister doesnt know when to quit talking so Shaylee kinda has her own personal coach...lol

Dani

Vida - posted on 11/19/2008

My daughter Vilija learned some ASL as well, the ST used it along with spoken language during ST sessions, we know about 60 or so signs. We play around with it, still.

Marie - posted on 11/17/2008

When he was younger, we communicated primarily with ASL (American Sign Language). At one point, I lost count at 60+ signs. He was really great at it and I noticed a huge increase in verbal language development at that time. He still remembers probably 30+ signs and uses them occasionally, especially if I am not understanding his verbalization. I really found ASL to be invaluable and used it with my 2nd son when he was 2+ yo and still not talking.

Haven - posted on 11/17/2008

Have you been using sign language to help you communicate better with Drew?

Marie - posted on 11/17/2008

My son Drew is 7 yo. He has been in speech therapy since he was 18 months old. He started talking around 2 yo. Even then, it took a while to realize he was talking because he was almost unintelligable. Here we are at 7 yo and he is still extremely hard to understand. He continues in speech therapy and they are considering surgery to help him stop air and speak better. My experience has taught me "Cleft ahead: expect delays and be extremely PATIENT!" It is hard to know they want to communicate and can't. I hate seeing Drew with friends and hearing them say "What? I don't know what you are saying..." as they turn and ignore him rather than figure it out. But, he is great with it and we try to teach him patience and understanding as well. Good luck with everything!