My daughter is 19 months old and can only say Mama and Dada(that you can understand). Everything else she tries to say comes out nasally and it sounds like she is humming the word. She goes back to the ENT for a re-evaluation of her cleft palate in August. She does know some signs, but were trying to get her to say the word and sign but she can only do 1 or the other. Does anyone else have this problem.
yes, my 21 month old son says mama,dada, and no but all his other sounds are grunts or growls. he does understand what we are saying and can sign some things. all our speech thearpist and doctors said that as long as he can understand us and has a way to comunicate that is what is important. i would keep the signing up, she is still young. just a month ago, all thomas could do was cry or throw a fit but now he is signing more, eat, outside, thank you and we are learning potty this week. as long as you keep it up and tell her caregiver to do it all the time to she will catch on. i stay at home with all my children but i have taught all the grandmas and older brother to sign to. it has helped us so much!
good luck,ashley
My son Stevie is now 4. Was diagnosed with DiGeorge back when he was 6 days old.
He has had the speech problems also. At 4, I’d say his talk is about an average 1 - 1 1/2 year old. We were told that it would be around 3 when any learning difficulties would actually show. We waited for that to happen before we did anything. I wish we had done something prior to this. Since you’re seeing problems already with it, I have to say one thing…get help already for it! Prolonging it isn’t worth it.
Stevie is now in preschool, an early intervention program. He’s doing great, they work with him on speech, and other things. I am thankful there is a program out there for him. (still isn’t potty trained either…)
My daughter is 5 yrs old, and she has the same problem with her speech as well. She is at a point where she is trying to say more words, but I have a hard time making some of them out still. We have also started her on signing, which has mad things much better for her and us. It has lessened the temper tantrums and her pulling out handfulls of her hair because we couldn’t understand what it was that she was trying to say. She too was in an early intervention program from a very early age and was seeing a speech therapist. We have just found out at the biggining of this year that she has a slight cleft pallet towards the back of her mouth. The canial facial surgeon that she see wants her to be saying more words, which she does, but she will not say anything whenwe are there to see him. We are going to use a camcorder and videotape her saying the words and bring it with us when we see him in January. That way if she doesn’t talk when she is there again, we can show him the tape. Hope this helps out a bit.
Bonnie
Bonnie - does your craniofacial surgeon have much experience with VCFS/DiGeorge? Consider having your daughter seen by an experienced team. Many areas have great ENT/Craniofacial/Speech evaluation teams now (Syracuse, Philadelphia, Boston, Atlanta, to name a few). Is she still in speech therapy? Its not uncommon to have a child decrease their speech because others can’t understand them & difficult to rebuild that trust. Before surgery, a knowledgeable speech pathologist can help determine which sounds can be corrected addressed before surgery. A nasoendoscopy is a common evaluative procedure they might use. Pharyngeal flap surgery (or similar Velo Pharyngeal Insufficiency surgery) won’t be nearly as effective if she won’t do the post-surgery therapy needed in order to produce the correct sounds.
My daughter was seriously - significantly delayed in speech & intelligibility, consistent speech therapy helped tremendously. She also learned to sign from an early age & we continued even after her diagnosis (at 2 1/2yo). Because of other medical issues, she was unable to have the corrective surgery until just last month. She was not always understable, but always persistent! Now, at 13yo she still loves sign language & is now taking spanish! ANYTHING is possible!!
Lisa
My daughter is 5 yrs old, and she has the same problem with her speech as well. She is at a point where she is trying to say more words, but I have a hard time making some of them out still. We have also started her on signing, which has mad things much better for her and us. It has lessened the temper tantrums and her pulling out handfulls of her hair because we couldn’t understand what it was that she was trying to say. She too was in an early intervention program from a very early age and was seeing a speech therapist. We have just found out at the biggining of this year that she has a slight cleft pallet towards the back of her mouth. The canial facial surgeon that she see wants her to be saying more words, which she does, but she will not say anything whenwe are there to see him. We are going to use a camcorder and videotape her saying the words and bring it with us when we see him in January. That way if she doesn’t talk when she is there again, we can show him the tape.
Lisa,
My daughter does see a cranial facial team in Ann Arbor, Michigan. We live in Michigan, so it would be finacially difficult for us to go to any of the cities that you have mentioned. Yes, Sierra is still in speech therapy, she has been since she was just a little over a year old. Her speech therapist is currently working on her with pictograms and is trying to get her to use a sound board. Her speech therapist doesn’t know sign, but has just ordered a sign language curriculum for Sierra. Sierra has been learning to sign by watching the Signing Time DVD’s. When she does sign, if it is a word that i know she can say, I remind her to say the word when she signs it so that she doesn’t just rely on the signing to cummunicate what it is that she wants. She had figured out about a month ago now, that she can put many words together to form thoughts ans sentences. We were both so happy that she could sign she wanted to play music on a pink piano. She must have signed it at least 20 times or so with a huge smile on her face.
Bonnie
Bonnie,
We are in Michigan also. U of M is the greatest, love the doctors there. Small world…I’m glad to know there is someone close going through about the same issues.
Lisa,
I have noticed that the Philadelphia has a great children’s hospital for children with DiGeorge Syndrome. I wonder if it would be worth the trip to get some more knowledge about why Stevie is having such trouble with speech? I’d gladly make the trip to see some specialist that way. He is in preschool, and is doing well, but I’d compare his speech to that of a 1 year old at this point.
I’m so glad I found this site, looking forward to more chat with you guys.