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I have a cleft palate baby too!!!

Posted by on Jul. 28, 2009 at 10:21 PM
  • 6 Replies

I have a wonderful 4 year old girl.  Her name is Kimberly.  She was born on May 28th 2005 in Lakeland Regional Medical Center.  We both were born with a cleft palate.  I was born with no roof to my mouth what so ever.  So threw my 23 years of life I have had a few surgeries to rebuild the roof of my mouth.  Luckily with Kimberly hers was very small.  It was in the soft palate of her mouth witch made it possible to breast feed her.  Most moms with a baby born with a cleft palate have no warning.  Some moms do, due to the cleft lip.  You can see the lip not formed in an ultra sound.  Most moms don't expect to have a child born with this birth defect unless it is genetic like me and my daughter.  If you need advice or if you have any questions feel free to ask.  I feel like I am alone too. 

 Kimberly is getting ready to start school and because of the cleft palate she has a speech problem.   I am having a very hard time with the school board wanting to put her in a handy capped school.  I went to a normal school where I received speech therapy every day.  My question is why can't they do the same with my daughter?  She has been threw speech therapy since she was 15 months old.  If your a mom and going threw the same thing we need to have a voice for our children.  I don't think my daughter should have to go to a handy capped school because she can not pronounce words properly.  I don't have a problem with handy capped children but, those children need more one on one with teachers.  I have to take her to child find because of CMS.  I don't understand why they can put interpretors in a class with one child and they can not work with my daughter.  I am sure my daughter is not the only child going threw this.  So I am asking moms to speak up and have a voice for your child. 

by on Jul. 28, 2009 at 10:21 PM
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Replies (1-6):
LilmomaShan
by on Jul. 28, 2009 at 10:34 PM

My son was born with a cleft soft palate as well. Not herediary just a fluke i suppose. It was my oldest. Hes now four. Had surgery and got it repaired. Done speech therapy but now we are on a break wwhile we wait on him to be getting ready to start pre k with the local head start. Im not sure what our future will hold as far as school but i have to say i would feel the same. He may have some speech problems but i can almost always understand him. Good luck to you and your LO

bstormsfl
by on Jul. 28, 2009 at 10:36 PM

My son is 9 and has autism. He has the mental capacity they said of a preschooler. He has been in school since he was 3. He isnt in a handicapped school. He is in a regular school but in a life skills class. He gets speech at school and OT. Personally as a parent I didnt care if they needed to place him in a handicapped school as long as he got what was best for him.

damira
by on Jul. 28, 2009 at 10:37 PM

I'm shocked they are trying to put her in a different school. I'm a speech pathology (therapy) student. Yes, they should absolutely be offering her services at the public school assigned to your area.

kimbeansmom
by on Jul. 29, 2009 at 3:05 PM

The closest school to us is Combee Elem.  And Doris Sanders is right behind it.  The All Childrens speech theripst sent us to child find.  child find wants to do further testing on her because she will not cooperate with a stanger and wont let me in the testing room with her.  The only handi capped school near us is Doris Sander and those children need more help then she does.  Child find tested her for everything except speech.  They are saying she is mentally hadi capped because she doesn't know what a vertical and diagonal line is.  I don't understand why they tested her for these things.  This was supposed to be for speech not mental reconition.  I don't have any problems with a handi capped school.  My problem is she has been screened for everything starting at 15 months old.  I have called every one I could possibly call and no one can help me.  I have to do this because CMS says I have too. 

kimbeansmom
by on Jul. 29, 2009 at 3:16 PM

Would you be ok with them taking time away from your son for somthing as simple as speech therapy for my daughter?  I went to a normal school and I got speech therapy every day and my cleft palate was way worse then hers.  The school boared is saying we don't have enough teachers as it is.   My daughter has been tested for all of these things since she was 15 months old and never not once has any one said she had mental problems except for these people.  They wouldn't let me in the testing room with her.  They asked her to draw a vertical and diagonal  line.  What 4 year old knows that?  She has never been in any kind of day care or school because she has had to many surgeries.  I am standing up for kids like your son.  I don't think they should put these children with normal children who can taunt and pick on them every day.  Its not fair to your son.  And its not fair to my daughter.  She can write her abc's and count to 50.  She can do every thing she refused to do with these people.  And I am sure your son is very intellagent.  Just having a yearly walk for these kids is not enough we need to do more for them.  We are their future, and we need to make every effort to make the school system %100 better for them.

kimbeansmom
by on Jul. 29, 2009 at 3:23 PM

Please what ever you do, do not take him to Child Find.  I can understand everything my daughter says.  We are no longer allowed speech therapy for her due to medicaid.  That is what led me to take her to Child FInd.  She has went to All Childrens since she was 15 months old.  She was tested for every thing under the sun.  And never did any one tell me she had any delays except speech.  I hope for our kids sake we can find a solution to this problem.  Thank you for your support. 

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