speech frustrations

Children and adults with cleft lip and/or palate issues

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speech frustrations

Postby heather » Thu Apr 17, 2008 12:09 pm

Eyson is now 17 1/2 months old and still has a one word vocabulary. I'm sure most of you know what I'm talking about. He uses mama for everything. I am frustrated to no end trying to figure out what the grunts and the points mean. I used to be able to figure it out easily, but now that he's older it's getting harder. He wants more and knows more. He hears just fine. He's extremely smart. He can follow just about any direction you give him. It's the talking that we have the problem with. I've now started having a problem with him biting and hitting. Does anyone have experience with this? Is this just his frustration with not being able to express himself? He's my third child and this is the first time I've ever had to deal with biting and hitting. He signs no more than milk, eat and thank you. I'm not one bit happy with the early intervention decision of not qualifying for speech therapy. That still makes absolutely no sense to me. I'm trying to find ways to get around their decision but so far everything is a dead end. Any help would be so great!!!! Thanks
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby Linda S S » Thu Apr 17, 2008 8:38 pm

I have and do work with a lot of individuals who have difficulty with speech. Acting out: biting, hitting, etc is common among those who are non-verbal or pre-verbal. Have you tried to teach him any sign language? Two of my nephews were late talkers and another has autism and stopped talking for a year. Signs were helpful for all. I began to sign with one of the kids I work with who has very limited speech with a simple game. He likes to have his feet massaged. I taught him the signs for "more" and "stop" and had him direct me when to stop and when he wanted more. My sister and one of my nephews was visiting me from out of state and he was whining for more cereal. We taught him the sign for more which he picked up quickly. Check the library, there are lots of signing with kids materials available. You can also check to see if there's a PBS station in your area that airs "Signing Time" http://www.signingtime.com/a9/Public-Te ... _info.html
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Postby heather » Fri Apr 18, 2008 12:36 pm

I have started teaching him sign language. He doesn't seem that interested in learning it, though. He only uses milk, eat and thank you. My older two children are learning signs as well so that they can communicate with him. I even thought that if he saw them using it that he would think it was fun and want to join in. Apparently I was wrong. I'm just at a loss.
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Eyson Brentley Van Eycke
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PECS

Postby Linda S S » Sat Apr 19, 2008 7:33 am

Will he choose between pictures by pointing? http://en.wikipedia.org/wiki/PECS
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hopeful thoughts

Postby Heide » Mon Apr 21, 2008 12:00 pm

Hi Heather,

I understand your frustration and hope that things work out for you as they seem to have for us. Our little one was not speaking either at 18 mo.; she also is very bright and perhaps a bit stubborn (ok, she hits once and a when things don't go her way). Looking back, she seemed to get what she wanted just pointing but I was starting to panic, especially when I watched the other children in her daycare class.

Last August (at about 19 mo.) she started speech therapy through the birth to three program, once every two weeks). While I know that helped, there were a few other things that we did "at home" that I believe have helped us (or maybe even just gave me something to do to make me feel a little more proactive). We took a "Kindermusik" sign and sing class that we took for six weeks last Fall ( the animal signs when we listened to noises interested her and I think watching peers doing signs encouraged her). I also made four photo books (just the cheap 1.99 case ones with digital pictures of her sister making signs and then the word it meant below) - we kept one at home, one for her daycare teachers and one each for the grandparents. Using her sister in the pictures was a way to motivate her and the grandparents to look at the book; it definitely helped her sister and I to learn the signs too:). Also, if you have an HMO, you may wish to check the coverage that applies, with our little one's BLCP situation, she is "entitled" to four covered speech therapy sessions and four "feeding" sessions (she still is behind in eating), so I try to see our HMO's therapist about every 6 weeks.

At about 21 months, she finally started using signs and almost instantly started using words. Now, at 27 months, she has come further than I dreamed; she uses four word sentences and I can generally understand her.

I wish I could give you some suggestions about appealing the county's denial of treatment besides going up the chain of command but, thankfully, we have not had to deal with the situation.

Finally, when our little one was born, we went to the Shriner's hospital in Chicago in pursuit of treatment options. Their teams seem to be "driven" by the speech therapists, perhaps a call to them may provide some resources and/or advice.

All the best,
Heide
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I Feel your pain

Postby michellebeau » Tue Apr 22, 2008 1:18 pm

Hi Heather,
I know they advise against it, but it's still hard not to somehow compare your children's development, huh? My daughter Kylie, who is 11 months, is not crawling and not babbling yet. The Early Intervention Specialists say she is delayed a little but not to be overly concerned because she is making progress every month.

I am sure that your son's biting and hitting is most definitely because he is frustrated. My son Peyton, who is now 2, would head butt the walls out of frustration. He couldn't express himself verbally. It was pretty stressful for us for about six months. Now that his vocabulary has taken off, he no longer butts his head. Thank god!

One thing I did to kind of "push" my son to try to speak words is I would make him repeat me saying sippy, or please, or snack, or milk, or more, etc. before I would hand him what he wanted. It seemed to help.

I would definitely check with your son's pediatrician about referring you to a speech therapist. They will evaluate your son and give you exercises to work with him on at home.

All the best!
Michelle
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Postby mia's mom » Wed Apr 23, 2008 7:00 pm

heather, mia is only 11 months so I haven't hit the speech issues yet, but I wanted to let you know that I had a horrible problem with my son biting and hitting when he was 16-24 months. He looked like a bull going after kids. I was so upset by it. I did alot of reading up on it and I guess its pretty normal. He's now 3 years old and he completely outgrew it. I forgot to mention that he doesn't ahve any cleft issues and has excellent speech skills. I read that this was just a normal behavioral thing for a child his age. I think babycenter.com provided alot of info on this. Hope this helps, Sandy
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Postby jacksmom » Fri Apr 25, 2008 11:09 am

Heather......we are in the same boat! Only, Jackson is in speech therapy once a week. I really believe that our therapist is doing everything she can, and still no progress. Jackson is still limited to mostly using Mamama for EVERYTHING! He can say yeah and no and tries to say open...but it just comes out as OOOOO without the "pen". The speech therapist evaluated him yesterday for his yearly evaluation and his speech is still in the 9-12 month old range. He knows quite a bit of sign language but I am sick of the signing and want to hear him talk so that he can progress normally in preschool. The cleft clinic speech pathologist won't do anything else until after his second birthday, so I'm not sure what I could be doing to help...other than what I already am. I know that you're not supposed to compare children, but my first son knew the alphabet and several poems by his second birthday. I can't even get Jackson to say Dada!
This has been a kind of 'feisty" post for me! :? Hope I didn't offend anyone. But, Heather I share in your frustration, and am also tired of everyone saying, oh he'll catch up, he's been through a lot. I even had someone tell me that maybe I picked the wrong surgeon, and someone else should have done his palate repair.......talk about seeing red!
Anyway...... Just wanted you to know that even WITH speech therapy, Jackson is no better off! Wish there was something we could do for our little ones to make life a little easier! Hang in there and I will too!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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