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Post by kimnz on Feb 1, 2005 12:55:54 GMT -5
Hi there,
It is so wonderful when we get to hear of some of our (your) children doing well with speech, I am so happy for them and their parents.
I am wondering (bearng in mind that each child is different and they all come with different problems) generally speaking - what are your tips and helpful suggestions for helping children at the 4-7 year old level for learning to speak in longer utterances and pronouce words clearly??
Some, do not have access to speech pathologists with experience in the area of children with Down syndrome and I would love to hear some suggestions. I am sure that many of you would have frequent SL therepy and could help us all.
We ourselves have been using the written word and pictures. I also make sure that Jordan can see the way I prounounce a word and I tend to emphasise the sound that I am wanting him to say eg I point to my bottom lip and exaggerate the the "ffff" sound for a word begining with f.
I need to know more.
Kim
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Post by Jessie on Feb 1, 2005 16:54:00 GMT -5
Kim, I'm so glad you posted this - it's our biggest struggle with Jason. I would like to add a question along with yours to everyone regarding signing. The first IEP I was in with Jason and his dad last year I admit I didn't know much and didn't fight as much for stuff. The ST told us that we shouldn't expect Jason to progress much more in his speech and that we should also not rely heavily on signing because it would limit the number of people that could communicate with him. So . . . if his speech isn't going to improve, we shouldn't rely on signing and she still hasn't gotten around to making the picture book for us to use (I'm making one myself). . . how the heck does she expect us to communicate with him?? And, yes, we hear the same thing that he is acting out at school and I firmly believe it's because of his failure to communicate his needs. He can't go to the teacher and say that someone is bugging him, etc., etc. My question is - doesn't signing make the most sense for someone who can't verbally communicate?  I almost feel stupid for saying that, but that's the impression we were left with from the ST. Jason's IEP is coming up this month, so I will be armed and ready with all of your input!! Thanks again, Kim, for starting this thread. Jessie |
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Post by meghans_mom on Feb 1, 2005 17:54:19 GMT -5
cd
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Post by kimnz on Feb 1, 2005 18:39:41 GMT -5
Hi Jessie (mom to Jason),
I am amazed that someone would say your son will not progress any more in his speech. My understanding is, is that ST is basically life long (meaning people continue to devleop) even if we are doing it at home with our child.
I have also heard those comments about "how will their speech improve if they are signing all the time". However for a lot of children with Down syndrome signing is just a bridge until speech sets in and even then children still use it if people just can't understand them. I have heard that they drop it spontaneously once they have the words. I have also heard that for better speech it is better to continue on signing even though the child can say the word!!
We will always get behaviour problems when there is the frustration of not being understood...just imagine how we ourselves would cope. Just think what it would be like going to France and not being able to say the words...how would we communicate?? I reckon I would be saying the words I knew and signing or miming the rest.... and getting awfully frustrated if it was something very important...like going to the loo. Which is just what our children do.
For us with Jordan having been at school one year (I didn't start him at school until later than other children as I wanted him to have more free play and socialise with other children at preschool) I have found a few difficulties as the teacher and aide did not know Makaton signing.
We used visual strategies to see how it would go... but the teacher also did not want her class distrupted so that again posed another problem. In the mean time Jordan acted up when he got frustrated. Eventually they went back to a visual time table and a social book.
Jordan's speech was understood at times and other times it wasn't. One very good thing for Jordan was that he was a great communicator and so he would act and mime as well as talk. He is also very good at following instructions so this made things easier for him. One day the teacher tried to punish him by sending him to the pricipal for hurting another child, is cut my heart as I knew that if they followed stratagies they wouldn't have a lot of these problems.
It seemed that what I said as a parent was not listened to in the same way that it was if the message came from a "professional" ......so I started to work on the professionals and told them that if the info. comes from them then we have a much better chance of good outcomes in the school (generally our professional people don't appear to be quite so highly qualified as yours in the States are). If the school had listened to me they would have found that many of our little problems need not have happened. However teachers (sorry to all you teachers on the site) sometimes have a problem if parents know more about things than them so I always try to be very diplomatic!
The deputy principal came to me and said to me that it didn't work disciplining Jordan in the way they did (yeah ...you should have listened to me). I agreed with her and told her it didn't. I told her that they had to deal with the problem there and then and then just leave it. They had to anticipate a problem happening and nip it in the bud before it even eventuated, to do this they had to know him and judge his actions etc as you can see if Jordan is angry or frustrated....it is written all over his face.
Also there is always a reason for Jordan to get to the stage of lashing out eg pushing another child.....you can almost always trace it to the frustration of not be able to talk. Therefore it is important to always have in place some method of communicating, whether is be an aide who is saying "Jordan you look upset are you angry??" He loves having his feeling acknowledged and this will calm him down straight away or for children who can't say some words may be some kind of book or signing.
You know, these strategies are so simple that I find it difficult to understand why people don't follow them.
We found that we had a good final term last year and Jordan is having his second day at school today....he had a good day yesterday. I noticed over the 6 week holiday period that Jordan's speech picked up and I am presuming it is because we were able to spend normal time just repeating his words, sounding out some sounds etc. This year I am going to speak to the teacher and ask if the aide can spend more time doing this.
Jordan talks in two to four word sentences but as I said keeps persevering until people can work out what he is trying to say if they can't at first understand him.
Kids are kids and I know that some of our typically developing children (I'm not so fond of that word NORMAL) can also set something up in order to get a reaction, or a child into trouble not very nice I know. Our kids can't always say "hey he pushed in line before me"....however they can give a big shove (and get into trouble for it)!! That's why is it important that that side has her eyes wide open.
WOW that was big long winded! Sorry about that.
Kim
NZ
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Post by christie on Feb 1, 2005 22:47:29 GMT -5
KIM ;D I ABSOLUTELY LOVED your post OMG Girl my thoughts exactly. Chris is 12 and Speech is his biggest delay and I was told too when he was young, this is all you will get out of him, move on to other issues, Hmmmm  BREAKING NEWS for those people, Chris has come so far from those days with speech and I credit it to Chris and us NOT giviing up. My Christopher's speech, I will not kid anyone, still has lots and lots of work ahead and if need be we will work on this area when he is 45 and/or older then that  Chris has total communication is to be used in his IEP, even at 12 years old. Verbal, prompting/cueing, sign and Augmentative Communication. He has and still now receives 150 min. a week speech/oral motor paid by the district and even thou every year its a fight, we fight and get the service ;D The thing with Chris that just breaks my heart sooo is he has soooo much to say and share with everyone. He is such an outgoing/friendly little guy. OMG he will go on and on talking up a storm BUT soooo much of it no one has a clue what he is saying   BUT bless his heart that doesn't stop him from trying to get it out  YIKES this subject just tears at my heart and I could go on and on rambling bout it forever I do BELIEVE sign is a good way to start BUT I and again I am only talking bout my thoughts on this, I find, at least for older ones that still have speech delays, signing can be a problem too as only people that know sign will understand and again limits one with the communication MUCH also. K, now after all that rambling and not even getting to your origianl ?, LOL Sorry, I tend to do that LOLOL For us what worked best was attending the speech sessions and just doing what the ST was doing during everyday routines in between sessions. CC |
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Post by alisonzmom on Feb 1, 2005 23:15:24 GMT -5
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Post by kimnz on Feb 1, 2005 23:33:51 GMT -5
Thanks everyone for posting and also Barb and CC for the insights. Thanks also to everyone for encouraging me to post.
I sure feel at home here and thank you all for making me feel welcome. It is just so nice knowing that people care about what concerns each one of us moving down this road together. I keep checking out everyone's postings on the site. I am a little better about navigating it now.
The book about classroom language skills was passed on to our teacher last year....I do not know if she read it or not but it was found in the cupboar (oh dear). We do not get ST like you get it over there, Jordan does not get one on one just some suggestions and it sure isn't every week. A bit sad. However like I say it isn't like that for other parts of New Zealand.
I also agree that if the child needs augmentative communication then that is the way to go. I have two booklets that are for children with special needs they are by Joan Green TEXT(American) they are interactive reading books and use velcro stickers and words as well as sentences. There are lots of books to buy from her as well as communication cards. Have you seen them?? I particularly like the ones about "how I feel".
Kim nz
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Post by kimnz on Feb 1, 2005 23:36:03 GMT -5
WHOOPS, I am still trying to get colour to work, where my above message says TEXT (in green) it is suppossed to give a web site, the site is www.greenhousepub.com and is an American site. I thought I was typing the website in green. Kim nz |
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Post by alisonzmom on Feb 2, 2005 0:23:51 GMT -5
Kim,
Thanks for the link to Greenhouse Publishing! I've added to my list of links for the future!
Barb
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Post by YoshsMom on Feb 2, 2005 9:11:58 GMT -5
As long as you always say what you are signing and encourage speech, signing does not interfere with learning to talk. It does cut down on frustration by giving the child a way to express himself. Yes, the number of people who understand is somewhat limited, but he will be able to get basic ideas across to family and teachers.
PECS ( Picture Exchange Communication System) is another option. It uses simple pictures to represent basic concepts and common objects. Some kids use a velcro board, some have the pictures on a key ring. They point to the picture of what they want or need, or you point to it to ask or show something. But talking is always used as well.
Jessie, you need to have a long talk with this teacher. Saying Jason will not progress means she has given up on him and that is outrageous. Every successful special ed program I have worked at was based on the idea that every child can learn. If one of my students wasn't learning I would find another way to teach him until I found one that worked for him. Sorry if I sound preachy, but teachers like that make me so angry. Jason deserves a teacher who believes in him as much as you do. Of course he is acting out, if he can't express himself. I would push for a combo of signing and PECS used in school, and a different teacher. Again, sorry if I came on too strong.
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Post by Jackie on Feb 2, 2005 9:43:39 GMT -5
just an non professional piece of advice....LOL...but I think that any tools you can give your child to communicate can't every hurt....signing....language boards...etc. Nothing inhibits speech as much as frustration....and for many of our kids during their early years...clarity and fluency of speech is a real problem and makes them hard to understand. When you cant be understood...it just stands to reason that you might stop trying all together.....so any thing that keeps the speech flowing seems ok to me.
I might also suggest anything that allows your child to develop performance skills such as a childrens theatre group....even a mime class will teach them communication skills.
Of course if you have a ST you trust...that is also probably your best tool.
And inclusion with peers the same age with normal speech...dont forget that one either!!!!
Jackie mom to Emily 24
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Post by Jessie on Feb 2, 2005 10:14:21 GMT -5
We will definitely be having a long talk with Jason's teacher and ST! It does make me sad that people in these positions would give such a grim prognosis when they had only known Jason for a short time when we had that meeting last year.
In this last year he HAS progressed, but I don't know if they are seeing that at school. I don't think he really likes it there. He will not participate in group activities and whenever I have been in his room for holiday parties, etc., he doesn't talk to anyone, he just clings to me. For that reason alone we need him to be able to communicate with us and tell us how he feels and what is going on.
I know there are things that he must wonder about (to what degree I don't know), but can't express his feelings verbally or ask questions. I imagine he probably has questions about his real mom and why he never sees her, where did me and DH go last week (honeymoon), why does that kid at school bug him, etc., etc.? Our dilemma is how much information do we offer him or assume what he is thinking? I don't want to dwell on his mother issues if he's not even thinking about her!
There have been a couple of times where he and I had a rough morning (him grouchy, me not in a patient sort of mood) when come to find out it's because he wasn't feeling good. Things would have been so much better if he could have just told me he didn't feel good.
I could go on and on, but I'm pretty sure all of you have been down the same road and know exactly what I am talking about. It's just so sad and frustrating at the same time.
Jessie
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Post by meghans_mom on Feb 2, 2005 10:22:14 GMT -5
have to apologize for my non-post above...seems one of my kids must have done that when i wasnt looking, LOL!
anyways - my big speech theory, and ofcourse i'm sure it's not true for all our kids - but it does hold true in Meghan's case.
Meghan has all the tools needed to make speech but she can't because all the underlying things she needs are not there or are not strong enough.
Her jaw, tongue, musculature in that area are all extremely weak and she can't form words (that outsiders can understand) and can't make a longer sentence because her muscles get tired.
With Meghan we're working on individual sounds, lip closure, tongue retraction.
Some of the things we use are an electric toothbrush on the tongue, gum lines and teeth to stimulate and build tone. Her ST also uses a facial massager (externally) to stim & tone. I also do scratching exercises on her lips/chin/cheeks and massages in the neck/arm/shoulder to build tone and help her "center" herself.
We alternate chewing different textured foods on each side of the mouth (crunchy,chewy,etc) to help w/ tongue lateralization and strength.
We use straw drinking, making faces, chewy tubes, bite sticks, etc....
my understanding, with meghan atleast , is if we dont build up the underlying stuff the speech won't really be there for her...it's her biggest challenge & weakness.
I also find reminding her to slow down and repeat after me helps alot too....We work on simple short sentences and then go from there.
Hope this makes some sense....good luck! of all things, I think dealing w/ speech or lack thereof is very difficult!
laurie
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Post by alisonzmom on Feb 2, 2005 11:56:15 GMT -5
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Post by Kristen on Feb 2, 2005 12:49:18 GMT -5
Jessie -t hat is reduculous! Who cares if signing cuts down on the number of people who understand him? If his speech isn't going to get any better (according to her then it INCREASES the number of people who can understand him so why not? UGH! Thank you for this thread. We are currently on a signing strike here. Carter did the opposite - once he leanred sign language, he gave up words Nice one. We tried, but everyone is different. He was saying 15ish words at 18 months and now at 2 1/2 nope. Picks up signs in only a few demonstrations and integrates them into his sign sentances NO PROBLEM, but won't say it anymore. When he gets a little closer to school we are going to teach him a few more to round out what he has to express basic needs (we know what he wants, but no one else does, you know?), but it's at the rediculous point here. |
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I almost feel stupid for saying that, but that's the impression we were left with from the ST.
BREAKING NEWS for those people, Chris has come so far from those days with speech and I credit it to Chris and us NOT giviing up. 
BUT bless his heart that doesn't stop him from trying to get it out 
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