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Post by momofrussell on Jul 22, 2004 16:54:44 GMT -5
Well, for the most part nothing was new.. he still has Autism :lol We just talked about the school and their views which he is WELL aware of. His take on Autism and mine are the same so I guess that is all that matters for now on that stuff.
We did talk about the speech and communication. He says for a child as intricate as Russell, he is not the best one to give advice on WHAT would be best for him nor does he fully understand the WHYS of why Russell doens't talk nor communicate. We talked about Apraxia, Dysphagia and Dysarthria... and that I had talked to the school on it. He recommended I go to the Children's Hosp and get an outside eval by a SLP team... they have a great program there and he has refered many children there. He says DXing things like Apraxia is a bit foreign to him and that there is alot to understand when it comes to DXing other speech probs... He still can't garuantee that Russell will ever talk ***sigh*** which I know.. he may say a word here or there sooner or later but we don't know to what extent Russell will be able to understand and talk/communicate. I told him a few moms have kids that didn't talk until they were 8 or so.. he said that anything after that would be rare if he didn't by then. I already know this... It does hurt to hear it again. He says, unfortunately his patients don't usually include a typical 6 yr old w/DS... he sees the ones like Russell that have mulitple issues going on.
He also said that he has seen other children like Russell and that Augmentative Devices don't work too well... but that's not to say it can't...
He asked me if I REALLY thought Russell knew what he was doing.. and could understand communicating... I really don't know... there is a part of me that says NO. I know he knows a few things and his receptive language has improved some, but he is still WAYYYY low comprehension wise all and all. So, I will call the Children's hosp and set up an appt there and go from there. I need to double ck that our insurance will cover it... The doc said there is nothing wrong with always seeking out and trying new things for Russell. Which I needed to hear. There is a part of me that thinks, this is who Russell is, but the other side of me wonders if there is something more out there to help him.
We shall see what the hosp program says when we get there.
A.
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Post by christie on Jul 22, 2004 19:34:35 GMT -5
A ~ I think getting an outside independent speech evaluation for Russell is a WONDERFUL idea ;D Can't hurt thats for sure and sometimes if nothing else we need to be reminded, we have done all that we can do for our child. Now girl I am telling you, for what its worth you can most definately have your district pay for this outside evaluation if you find your insurance doesn't cover it. Actually doesn't really matter if your insurance covers or not BUT if you want to go the insurance route first that is FINE. BUT I just wanted to stress the distict is another source to get this done if your insureance doesn't cover I have had my district do independent evals for Chris more then once and it was no biggy at all And I just have to share with your girl, Chris is 11 and 1/2 now and although his speech is his biggest challange, honestly we still at this age see improvment and new words Yes Chris may not make the speech of the year, BUT it improves and you wait and see my bet is Russell will get it ;D CC
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Post by Debi on Jul 22, 2004 20:07:31 GMT -5
Hey A just wanted to second my smart pal CC here All she says about school doing the independent eval is correct and I think you DO have a good resource with your ped. Neuro and going to the specialized clinic is also a great idea. I know it's so hard to know WHAT to do when speech is so delayed and it dismays me to hear that your ped thinks it won't come after a certain age. I know he is being realistic. But Gabe is still plugging along in speech and acquires new words so... take heart
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Post by jeannette on Jul 23, 2004 7:55:28 GMT -5
I haven't been on in a while but just wanted to say my prayers go out to you and you're entire family. You're doing right by seeking as much help as possible. All kids develop differently, whether having ds or not. So alone with expect help, Russel may just simply need time. Time to recognize his own potential. So I say to you, keep searching for resources and remember God don't put on you anymore than you can handle.
Jeannette Mom to Mekyah(ds-8 mths)
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Post by shellk on Jul 23, 2004 9:43:35 GMT -5
A, The outside Eval sounds good as you know I am getting on on Kourtney not for speech tho. Wish you tons of luck...Seems like our work is never done always another doctors appointment or Eval , Sometimes I think that maybe we should have the dregees in medicine, seems like we are the only ones who really know what is going on with our kids and the doctors keep us on our toes. Tons of leg work. Good luck girl !! Michele
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Post by Robin on Jul 23, 2004 10:02:54 GMT -5
HUGGERS to you Adrienne! I have to say ditto to what CC and Debi said. If your insurance wont pay for it, the school can. I think going there for an opinion is a GREAT idea!!!! And I know they say that kids dont learn alot of language once they reach a certain age but I for one will be so happy when they squelch that rumor. Chase has done the most improvement in the last two years with his speech, it has gotten so much better and he is 12 now. I understand what you mean about..... grrrrrrrr I never know if what I say is going to be taken the right way by others but okay I am going to say it and if it comes out right okay and if not, scuse me I know what you mean A when you say sometimes you think....this is Russell and then you think okay maybe there is more to help him, and feel the need to keep looking. It is part of what makes you such a great mom, the desire to keep searching for more answers to help Russell be all that he can be. I think most of us have that drive, we all are looking for answers to making our kids be every bit more that they can be. I know the dr said to me last month, this is Chase, there is no more that we can do for him, it is time, you have to accept that and learn to live with the way he is now, it will get no better. I sat in his office and cried and went home and cried and didnt sleep all night thinking, does Chase really have to be this way for ever? Is there truely no way for him to be better then he is now? And I cant accept that A, I have to keep digging and searching for answers to help him be more, it is unbearable to me to think this is it. d**n dual diagnosis's anyway you know? In Chase's case to think that behaviors and mental Illness will be the stopper in his life is unacceptable to me. And it makes it worse because he has DS, I ALWAYS hear people say people with DS dont act like Chase, it must be something we are doing wrong, maybe we arent doing soemthing right, I want to grab those people and choke them they dont have a clue. I am off subject here....sigh must be my age (although I am younger then those two story tellers you call friends )...I just want you to know I feel your pain, I know what you mean about being torn between acceptance and searching and I think it is good to accept if possible but for us to never stop searching. hugs, Robin PS...and as always I will still say...Russell will talk, it may come really late, he may never become a motivational speaker or preacher with golden words, but he will talk, mark my words, when he has something to say it will come
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Post by Cathy on Jul 23, 2004 17:50:05 GMT -5
A------ I think a second eval is a GREAT idea.. I have had to do it on all fronts of therapy...ST PT and OT.. becuase our school district stinks!
Good luck and keep us posted. BTW-- can't wait to get my picture of Kevin for our PECS.. ROFL
Robin.. honey.. I have to say this.
YOU ARE A WONDERFUL MOTHER!!! You have not done anything wrong.. and if you need help with the strangulation procedure you can count me in!
Hugs,
Cathy
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Post by Deborah on Jul 24, 2004 7:15:26 GMT -5
Thank you Robin .. big hugs to you (( )) You have posted everything I am feeling right now about my own situation with Jennifer and her speech.
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Post by momofrussell on Jul 24, 2004 9:20:47 GMT -5
Thanks guys! And Thanks Robin.. I KNOW there is a good chance Russell will talk.. even if it is one or two words.. but "hard wiring wise" (if there is such a thing) there is a "cut off" age kids don't usually speak after, if they haven't yet.. so as I am hopeful, I HAVE to be realistic.. I AM a realist. I did tell the doc about Chase and Annie's boy Mikey not talking until WAYYY later.. and he said it can happen! But if I also wasn't realistic, I'd get WAYYYYY hurt if it never happened. And the speech/comm thing disapoints me enough as it is.. even being realistic.
I called the place at the hosp on thur but they were closed... and I have had a NICE cold (rad sore throat) thanks to the boy in question LOL... Thanks Russell! And we have no dryer anymore LOL.. so I will call next week!
A.
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Post by alisonzmom on Jul 24, 2004 9:21:20 GMT -5
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Post by momofrussell on Jul 24, 2004 9:28:27 GMT -5
Barb, the doc was kind of talking like the saying you were posting... he said to NOT stop exhausting all your options for Russell. But you still have to be realistic in your approach and thoughts, or at least I do. It just gets SOOO tiring sometimes.. and I know I am not alone in those feelings. Sometimes I get GUNG HO on figuring there might be something out there a bit better but then it gets tiring hitting lots of walls. I have hit lots over the years... some doors but lots of walls. And now doing the same type of stuff for Regan and her ADD and what will help us.. so MAN does it get EXHAUSTING... But.. I am pluggin right along for now... A.
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Post by rickismom on Jul 24, 2004 14:29:14 GMT -5
There is a big difference between "giving up" and "acceptance". The way I see it, No way would I give up! But "acceptance" means that I love my child ;D and cherish her ;D even when she does (thank G-d, rarely) those really wackey behaviors that (almost) make me want to give up on her behaving more normally. "Acceptance" means that I invest a normal (OK, NEARLY normal )amount of time, energy, and money in looking for a treatment or therapy that will help, without riding rainbows in search of the magic "cure" some quack thought up. There is so much knowledge today, and so many types of alternative communication, that I can't see giving up... Acceptance means that I see my job as doing what I as a normal mother can do, and knowing that the RESULTS are not my department.
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Post by momofrussell on Jul 24, 2004 16:43:38 GMT -5
Nicely put Rickismom... glad to know I am a "normal" mother LOL A.
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Post by LisaRI on Jul 31, 2004 15:17:52 GMT -5
A ~ Have you ever heard of Tangible Symbol System? I read about this on ProTeacher BusyBoard Community. Here is what it says: Posted by Jennifer K. on Jul-14-04 at 08:58 PM (EST) I am teacher assistant who will be getting a student with a visual impairment. I use picture symbols for children who have little to no language skills to communicate wants and needs. I would like to find something like that, using textures ( like braile ) for a child who is 24 mos. He knows a little sign and his family's first language is Spanish.If anyone has any ideas, I would love to hear them! Here is a reply from someone: If he can see, the Visually Impaired specialist can help you determine if modifying your pictures would work. Sometime changing the background, size, level of contrast, etc. will help the child be able to use them. If not, you'll have to use tangible symbols instead. Do a google search for the Texas School for the Blind and Visually Impaired. They have a standard object vocabulary list. However, with a younger or lower functioning child, you often have to develp your own using objects that are meaningful to the student. For example, my deaf/blind student has a tray of objects including a cup (I want a drink.), a spoon (I want to eat), a shoe (Let's go for a walk.), a ball (Let's play something together.), a piece of foam that feels like the top of his mat in his sensory center (I want to play in my center by myself.), a piece of diaper (I need to be changed.), etc. The important thing is to remember that the object symbol must have meaning to the child. For example, we use a piece of a booksack strap to mean "Time to get on the bus." A miniature bus would not have any meaning for the child. He can't see it, so it isn't at all like a bus to him. However, he knows that when we pick up our booksacks, it is time to go home. So, the booksack strap is similar to his experience at bus time. (Just close your eyes and see if you can still find the resemblence.) The Texas School website also has lots of other good information too. Good luck. Hope this helps..
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Post by updowns on Jul 31, 2004 18:08:39 GMT -5
Aaw A, I'm sorry the neuro ped couldn't help. I would also like to reinforce what CC said - Sarah is 12 and speech is her biggest delay but she is still making progress in that area.
Good luck with the evaluation.
Stella
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