No luck

Children and adults with cleft lip and/or palate issues

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No luck

Postby heather » Thu Jun 12, 2008 11:46 am

Eyson's reevaluation was done last week and I just got the results back. He doesn't qualify yet again. At 16 months of age he had a one word vocabulary of mama and had a deficiency of 21%. Now at 19 months of age he still has a one word vocabulary of mama and they rated him yet again at a 21% deficiency. For those of you who don't live in the state of Illinois, consider yourself lucky. It looks like i'm going to have to pull some money out of you know where so that I can get him the help he needs. And once again his written evaluation stated that he was such an adorable little boy but he's knows too much to qualify. Basically, all the sign language I have taught him keeps him from being eligible. I'm not a very happy person right now. I feel sorry for my fiance for having to put up with me this week.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby Babyk » Thu Jun 12, 2008 12:46 pm

wow.......I can't believe that. Do they even give you any alternatives to try? Our pediatrician is the one who set us up with the therapists we have for Avery now....perhaps yours could offer some more suggestions?

I understand your frustration. Unbelievable!
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Postby jacksmom » Sat Jun 14, 2008 2:39 pm

Heather...I am just absolutely in shock!! Knowing sign language shouldn't have anything to do with a SPEECH evaluation!! How delayed does he have to be to receive services? Here in Alabama, it has to be 25% or greater. What is another 4%, to get a child help that he needs!?! Okay...I guess my ranting isn't getting you anywhere either!
On the positive side, we are getting speech services through an outside group, and insurance has been really good about covering most of it. We just have to pay a $20 copay each visit. It would at least be a start!
Don't give up yet...just keep talking to different people until you find someone that wants to help!
Hang in there!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby jacksmom » Sat Jun 14, 2008 2:41 pm

Heather...I am just absolutely in shock!! Knowing sign language shouldn't have anything to do with a SPEECH evaluation!! How delayed does he have to be to receive services? Here in Alabama, it has to be 25% or greater. What is another 4%, to get a child help that he needs!?! Okay...I guess my ranting isn't getting you anywhere either!
On the positive side, we are getting speech services through an outside group, and insurance has been really good about covering most of it. We just have to pay a $20 copay each visit. It would at least be a start!
Don't give up yet...just keep talking to different people until you find someone that wants to help!
Hang in there!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby karleysmom » Tue Jul 01, 2008 5:20 pm

Not sure if this will help but down here in Florida we have something called Healthy Start. They have one in Illinois http://www.healthystartassoc.org/hswdir2.html I'm not sure if you have tried it or if they would even cover it but it probably couldn't hurt to try it. I haven't been on here for a while and don't know much more than what you wrote in the last couple of posts. Have you talked to your Cleft
Clinic or nurse about all of this? Also, did your pediatrician recommend speech for Eyeson? Our pediatrician recommended it for Karley and even set us up with a speech pathologist. We didn't have to go through an evaluation. She has been going since she was six months. She was kicked off FLA Medicaid after she turned 1 year and it has been difficult trying to get her back on but thankfully we did. When she wasn't on the medicaid, we have another program down here called Children's Medical Services which helped pay for speech. They were only allowing her to go once a week but now that she is back on insurance they are putting her back to twice a week. Not sure if anything I said will help but I hope it all works out for you.
-Karen 7/10/73 soft and hard cleft palate

Mom of....
Caleb 10/26/95 (NCA)
Will 4/23/97 (NCA) stepson
Karley 11/30/06 soft and hard cleft palate
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Postby mia's mom » Mon Jul 07, 2008 6:46 pm

Heather- I'm sorry to hear that you continue to have problems with the Illinois early intervention program. I pulled up their statute. A child is eligible if they have a developmental delay OR if they have a physical or mental condition which typically results in developmental delay. In NY, a cleft palate is a the second category= a physical condition which typically results in delay. It doesn't matter what percentage of delay mia has, she automatically qualifies because of her cleft palate. Also, where standardized tests are used, the evaluation team must also factor in clinical opinion- so if the test scores a 21, in their clinical opinion they can determine that he would meet the 24 or 25 percent level given the fact that he had a cleft, etc. It seems like they're trying to save a buck here. Budgets are tight in every state but for crying out loud.... You can always request a hearing to challenge the evaluation findings. Its really low key= not formal like a trial. You basically present the evaluation and argue your side- it would also be helpful to have a letter or something else from your pediatrician saying eyson needs speech and exhibits a significant delay which he would deem to be 25% delay- or something like that. hope this helps, sandy

(325 ILCS 20/3) (from Ch. 23, par. 4153)
Sec. 3. Definitions. As used in this Act:
(a) "Eligible infants and toddlers" means infants and
toddlers under 36 months of age with any of the following
conditions:
(1) Developmental delays as defined by the
Department by rule.
(2) A physical or mental condition which typically
results in developmental delay.
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Postby jacksmom » Tue Jul 29, 2008 5:21 pm

Hey Heather! Just wondering if there was any new news on Eyson's speech? Jackson is still making the same old sounds with nothing really new. He's in speech twice a week, and no one really seems to be concerned about his lack of progress but me! Our PS said that he wouldn't even look into further testing until age 4. Anyway, I was wondering what method they used to close Eyson's palate. Jackson had the double z plasty (Furlow method? I think) I've been reading about a bunch of kids who are having speech problems the same as Eyson and Jackson, and wondering if it could somehow be related to this newer method of surgery.
I'm not really happy with the response I'm getting from our PS. We will be back in St. Louis to follow up with Jackson's foot surgery in October. I'm strongly considering getting a second opinion from the cleft team there while we're in town. Which doctor do you guys use?
Hope everything is going good! Eyson is such a little heartbreaker! If he's anything like Jackson...he doesn't have to say much because he can get anything he wants with that precious smile! :wink:
Keep in touch!
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby heather » Thu Jul 31, 2008 9:45 am

Hello everyone! It's been a while since you've heard from me. We're getting married October 1st in Hawaii so i have just been consumed with planning. There's no news on Eyson's speech. He is now 22 months old with a one word vocabulary of mama. He is still learning his sign language so that he can communicate with us but there is no progress on his speech. He cannot be reevaluated for another two months but by then i will have taught him that much more so he probably still won't qualify. His pediatrician is the one who originally wanted him set up with speech therapy. Unfortunately I make very little money and the Early Intervention program is the only way that I can afford to get him the help he needs.
Jacksmom- I'm not sure what method they used to close his palate. It wasn't a zig zag definitely. The roof of his mouth looked like one solid stitch to me. Now that it's healed up i can see that there is a thin ridge running right down the roof of his mouth. I wish i could give you more information but i'm just not that up on all the medical terms or procedures. Eyson's surgeon is Dr. Albert Woo and he works out of the St. Louis Children's Hospital. He is a wonderful man and surgeon. I'm so glad that we decided to use him. You'll be very happy with him. He strives to please the parents. If his work isn't satisfactory, according to the parents, he will redo his work until you are happy. He's just such a wonderful man. I can't say enough good things about him and his staff.

I'm hoping that all the work my fiance and i put in to helping him with his speech starts to pay off. Because it really looks like the state of illinois just doesn't really care.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Congrats!

Postby Linda S S » Thu Jul 31, 2008 6:17 pm

Congratulations on your upcoming marriage!
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Postby Silver » Fri Aug 01, 2008 2:53 am

Congratulations on your up coming marriage. You know that children learning sign language is actually very smart. I would ask about having his hearing checked possibly something has happened. Would he happen to have any older kids around a lot? My younger brother didn't start talking till about the age of three and he had myself and older brother to hand him what he wanted without saying much besides making a small noise and pointing.
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Not talking yet.... teeth coming in / sequence....

Postby HollyBee » Fri Sep 05, 2008 1:42 am

Hey Everyone.

Graeme's (B:Nov 1st, 2006) still not talking, he's 22 months now and saying all different "meh" "my" "mo"... he is not interested in trying anything else, he's so busy destroying the house. He does blow air and make the "pbft pbft pbft" sound a lot of course with a lot of drool. (I'm counting about 4 more teeth trying to come in!)

We attented the cleft palate in Saskatoon, Saskatchewan, Canada (June 18 2008) and at that time the audiologist said he was not hearing through all the fluid, he just had ear tubes Feb 15th/08 ... not even 5 months prior. So Aug 15th/08 was round 2 ear tubes and I don't know.... I know he hears but I don't see much change in his speech. We're starting speech once a week right away and I know she's frustrated with the progress, as well as I am, I just think that he'll just do it when he's ready.

The speech pathologist at the Cleft Clinic did the same thing, saying how nice he was and doing good but he lost points in the development area as he's delayed in speech (no kidding) and he has some little muscles that need to come along a bit in his mouth from his lazy bottling habits when he was smaller. Oh the things I would do different if I had to do it again.

What's anyone's take on the way teeth have been coming in? Graeme's hard palate was not affected but he only had his top front 2 teeth forever (looked like a little beaver) and now finally some more are coming, but he also has a little snaggley one in behind his front one..... I'm going to take him to the dentist for an opinion on what's going on.

I just think I'm reading too much into stuff sometimes... I worry about everything, Graeme didn't walk until 19months and now I still see him be a little stiff when he walks... I'm just worried they'll tell me something else is going on!!!!!

Have a good one! Congarts on wedding, we just did that too May 23rd, Eyson is so cute!

Holly

http://www.babysites.com/sites/holy1976/

Graeme's soft cleft palate, repaired June 2007
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Postby Babyk » Mon Sep 08, 2008 7:33 am

We have our first appointment with speech this Thursday. Avery is babbling constantly, mama, b sounds and what sounds like bop bop. We have not had his hearing checked again since his palate repair. That will be next.
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Re: No luck

Postby Erick Owens » Fri Jul 20, 2012 12:03 pm

I have also seen the same kind of subject in my locality. The man is 27 years old and yet he cannot talk more than maa and paa. He can only recognize his father and mother. In this cases I think, what can we do? We can do research, try to sort out the defect but cannot guarantee that the subject will be normal. God almighty kept all the buttons in his hand.
Details of education grants in this page
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Re: No luck

Postby Linda S S » Sat Jul 28, 2012 8:18 am

I wonder how things are going by now? There are now a variety of apps for folks who are non-verbal. Proloquo2go among others.
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