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Post by Jessie on Oct 4, 2005 9:38:08 GMT -5
Or, maybe the subject of this thread should be "Acceptance". I've been kind of struggling with this for about a week or so, ever since we had Jason's pseudo-IEP meeting last week. I had requested a new IEP meeting for a few reasons. The major reason was to realign the goals so that everything is speech therapy related. The ST, Jason's teacher and her supervisor were very open to talking through our concerns and possibly changing the direction of his ST. This change of direction stems from his sessions at MSU and also the Kaufman clinic's recommendations. We went into the meeting with the goal of getting everyone on the same team to help Jason however we can using a common approach. What we decided was needed is for his ST at school, his ST at MSU and Nancy Kaufman to all meet and reach a common conclusion as to what the best method is for Jason. His school ST has a differing opinion than the other two. And, since Nancy Kaufman is willing to make a trip up to MSU to meet with his ST there (how cool is that?!), his school ST then also agreed they should all meet. Once that meeting happens we are going to reconvene and complete the IEP. Anywho . . . to get to the point here. During this meeting, Jason's teacher asked me and Brian point blank, "Can you guys accept Jason if he doesn't progress?". Hmmmm, of course our immediate response was YES, of course we can accept Jason - um, we live with him everyday for cryin' out loud! I have to admit that my response was a little different from Brian's. I said, "Yes, but I just don't believe it yet that he WON'T progress any further in speech". Brian chimed in and told them about the woman we met in Chicago this summer whose son didn't start speaking intelligibly until around 14 years old. My initial, insecure thought was, OMG, does his teacher see something in me that does not accept Jason? But, then I came to my senses and realized that she has no insight as to how I think or feel and just because I'm pushing for something to help him in his life, she doesn't have the right to judge me. And, maybe she wasn't judging me anyway, that was just my initial thought. However, that does lead me to wonder if maybe what she really is trying to say is, Jason is 12 years old, he can't speak intelligibly and never will, can you guys just live with this? She looks at the age level that he tests at (scattered 2 - 6 years old) and wants to say that he won't progress due to his cognitive level. I look at it as, Jason is ONLY 12 years old and I can't throw in the towel on this yet. There are people (Ds or whatever diagnosis) that are far less able-minded than Jason that speak intelligibly. He has AWESOME receptive skills. As far as the cognitive level, that's a which came first, the chicken or the egg question for me. If he could have back and forth, question and answer conversation, he may be further along academically and his level of comprehension may be higher than what he tests at right now. What I should have come back and asked her was, who gets to decide when the time has come to stop intensive therapy, stop trying to find new ways to help him and just let things progress naturally? Who gets to make that judgment call, when and why? In my mind I guess I feel like this school year needs to be completely focused on speech therapy, in and out of school. If there is NO progress by the end of the school year, then maybe we do just have to accept that he cannot improve in this area and continue to live our lives around this issue. I know that probably close to 100% of the parents on this board have their children in some sort of therapy, depending on their child's need(s). And, I guess to get back to my subject line, when is enough enough and you just let your family live life as normal as possible while accommodating a particular need (physical, speech-related or whatever)? I would assume that Jackie & MB could probably give good insight to that question since your kids are older than Jason. However, your kids are so "high functioning" that I'm not sure the therapy that Jason needs is on the same level that your kids may have had. But, I guess there still is the acceptance part of the question. At what point do you just come to peace that "it is what it is" in certain areas of their development? CC - I hope you chime in on this one since you go through similar struggles with ST for Chris. Have you thought about how long you will continue ST or is it not even an option for you to ever stop? Jessie
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Post by momofrussell on Oct 4, 2005 10:25:04 GMT -5
question.... when you work on full ST with the next school year, you are talking JUST speech? i.e. verbal? Will you be also working on total communication?
I am just curious. When we went to the DS clinic the SLP and I were talking about speech and total communication. She said that sometimes we take away other forms of communication to focus on another goal... she practices total communication.. which could be 25% verbal, 25% signing, 25% pecs...ect.... for a child.
I am not saying the route you are going is wrong... but I thought what she said made alot of sense to make sure when working on one area you don't forget there are other ways of communicating. I would hate for Jason to get frusterating working on speech (verbal) without another way of communicating which is just as important to him.
when you say stop ST... you talking about ST all together or your focus on verbal speech? I don't think we should ever give up.. but changing our focuses from time to time is definately needed. So... I think Jason could always benefit from some sort of ST and communication type therapy, even if he never becomes some really good speaker, he could be the BEST communicator!!! KWIM?
I think acceptance is hard. Heck, I am going through a rough acceptance and figuring it out phase as I type. I feel for you Jessie. I learned alot about who I am and who Russell is just from that DS Clinic and from looking at other placement options. Many hugs to you and Brian!
And I still have that video to send you! I went to tape it once and I screwed it up... LOL.. I need to get that done!
Hugs!
A.
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Post by Jessie on Oct 4, 2005 11:00:54 GMT -5
Good point A. Jason's school ST was getting a little panicky when we first started talking because she was thinking that we were asking her to abandon using PECs for Jason. We needed to clarify that what we wanted to see was more of a progression towards pushing him/teaching him to initiate using verbal communication as well. That can include being required to verbalize the PECs pictures, using gestures to prompt his words and then slowly backing down on using gestures until he uses words on his own. This child has so many facial expressions and hand gestures that I'm sure that will always be a part of his communication method as well!!
We also had to level set everyone as to what our expectations are and that we know there is no way that he will be able to rely on 100% verbal communication. We have accepted that he is not going to stand up in front of a crowd of people and deliver a valedictorian speech. However, I DO want him to graduate from relying on the PECs system. The example that I used with his teacher is, I need him to be able to say "Mom, head hurts". Simple as that. I don't even care if he uses correct grammar. We just need words from him for daily living activities.
Jessie
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Post by nica1 on Oct 4, 2005 11:16:46 GMT -5
Jessie, I just had to reply, my son is only 6 and is actually very high functioning in the speech area, But I just wanted you to know that I have meet at least 4 differant famalies that have told me their children's speech didn't take off until they were in their late teens. This last spring we were at a silent auction and they had a young man playing the piano he played so well, I had to go up and tell him what a great job he was doing. While doing this his mom came up and we were all talking and she was saying how great my son talked. Her son who I found out, was 26 years old had great speech and was quite the talker and so I said well your son is pretty amazing himself, she said he didn't start talking like this until he was 18. Up until then he rarely talked only one or two word sentences. I couldn't believe it, because he was talking to me like you or I would..... I have also heard similar stories from a few other famalies, so I say you can never give up. I'm not saying that I think you should have to run all over for thearpies but do what makes everyone happy and comfortable. Sometimes the best speech thearpy is just living life, I think. And to me what I have read you and Brian are completely awesome parents, Justin is a very lucky boy. I wish you the best of luck, Monica
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Post by nica1 on Oct 4, 2005 11:19:13 GMT -5
sorry I called your son Justin, I really meant Jason:) Monica
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Post by Jessie on Oct 4, 2005 12:14:50 GMT -5
Monica,
Thanks for posting that . . . it brings tears to my eyes when I hear stories like that - that there is reason to hold on to hope that he will improve.
Thanks so much.
Jessie
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Post by andrewsmom on Oct 4, 2005 12:29:27 GMT -5
You know...... I never really reply to threads on education or school situations, since Andrew is not there yet. But I have been having trouble getting Andrew PT through EI recently and I have to say that enough is NEVER enough. I think you are doing a great job and listen to your gut instinct. You would not have taken him to MSU or the Kaufman clinic (?) if you didn't have that gut feeling that SOMETHING will help him communicate better. You must feel deep inside that more can and should be done for him. I have a feeling you're on the right track. Keep listening to your gut instinct and I bet things will improve (for all of you!). Good luck!!! -Trisha
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Post by Chester on Oct 4, 2005 12:48:24 GMT -5
Good Question Jessie, and you'll know the answer.
I think it's the eb and flow of life. Sometimes you really have to push hard on something and other times you take it in stride and let whatever happens happen. Do I think change ever stops happening...no. We're all (people with and without ds) still working on the foundation for all skills, none of us knows when all of a sudden something will click and a growth spurt will happen.
Right now there's a big push for communication. Is Jason ready at this moment....maybe yes or maybe no. Will it hurt him if he's not ready, in my humble opinion, no, it's just more foundation building.
I find the question that Jason's teacher asked you interesting (if you can accept if he doesn't progress). It can be taken in SO many directions. I think I would have to ask her where she was going with it, or my mind would be spinning so many scenerios....mostly all negative.
Getting everyone on the same page sounds wonderful! How lucky are you to have everyone believe in Jason so much that they'll all meet?!
Dawn
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Post by donnac on Oct 4, 2005 13:03:39 GMT -5
Tyler's speech is not where we want it, but it has really taken off and blossomed over the last year. I think the thing that has helped him the most has not been his therapy, but his inclusion and interaction with his peers. (Even though my MIL said to me the other day, "Can't they teach him how to pronounce his words better?". Of course, this is one of the reasons that he goes to speech therapy!
I agree with you that the focus of Jason's IEP may need to change, but sometimes our kiddos surprise us when we least expect it. I know that it will make it easier for everyone involved in Jason's life to be able to understand him better, quicker, etc.
I used to wonder if Tyler would ever say, "Mom head hurts", and now he finally does (just not all of the time though). He went from signing drink, to saying drink, to saying Mom drink, to more recently, Mom I'm thirsty. I did a little happy dance when I heard that. Again, a lot of his increased speech and intelligibility has really increased just over the last 1 to 1 1/2 years.
I'm sure that Jason will surprise you some day! He seems to have great advocates.
Donna
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Post by Chris on Oct 4, 2005 15:35:16 GMT -5
Jessie,
I think it is way, way too soon to give up on speech! Everyone has the ability to learn their entire lifetime. My problem with therapy is that sometimes it seems to take over Sarah's life. A couple of years ago my biggest heartache was that Sarah never got to just be a baby. I was always running her here and there for therapy and doctor appointments. I don't think it is unwise to take a break from therapy once in a while but I would never give up on a twelve year old.
My first reaction to his teacher's comment was that she has given up on him. I was really bothered by her comment. I wish you could go back and ask for some clarification about her comment.
I am always impressed that you have taken on the responsibility of being Jason's parent. You are doing an awesome job. It would be so much easier just to accept his level of speech and not fight. I am so happy you are fighting for him!
Chris
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Post by Connie on Oct 4, 2005 15:49:45 GMT -5
Jessie, I had Collin's doctor aske me the same thing last year but only it was reference to me wanting him to learn to read and write because the school was giving me fits with his placement. But he asked as a friend and Christian....he just wanted to know if I would be able to accept Collin as he was/is if he never learned to do these things. My response was YES but I'm not willing to give up yet!!! After thinking about this question only you would be able to answer if is was asking for a mean spirited reason or out of concern for both you and Jason. Connie
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Post by CC on Oct 4, 2005 21:54:47 GMT -5
NOPE girl for us its NOT an option to ever stop helping Chris in the Speech area. I tell you why, cause when Chris was just tiny, I forget actually 3 or 4 years old and said very little and I mean very little just a few words, I was told by a so called "expert" in the field, this will be the BEST you will ever get from him go on to other things Needless to say I never listened or believed him and HONESTLY although I always go on bout Christopher's speech and how bad it is OMG it has come along TONS since I saw that so called "expert" What if I had listened to him, KWIM What we have done and still do is written in his IEP, TOTAL COMMUNICATION as his program, verbal, cueing, sign, augmentative devise, oral motor therapy... I TRULY do believe that is what has helped Chris come this far and what will help him to go even further in this area. The one problem we are having at the moment is a Teacher that has decided all on her own that only some of those components will be worked on Sorry but I say WTF who made her the one in charge and decide what part of the IEP she will work on, KWIM YES both Colin and I have accepted that our "Little Character" will never probably give the speech of the year BUT so what, thats not what matters for us. What matters is he gets his needs across to others and is able to socialize with better communication, however that communication ends up being. Chris has LOTS to say and I will do what ever it takes to help him be able to say it ;D For us I will say all the therapy that Chris gets is by far alone not the answer, lots of home carry over, as tiresome as it can be I do feel helps in the long run. I don't mean sit down speech lessons at home everyday, although we do have those to But just emphasizing speech during daily tasks. Chris loves to go food shopping, odd cause personally I hate it BUT LOL he loves it soooo I turn that into a game of sorts. He has to tell me what it is before he can put in the cart. Was cute actually one day I was beat and not really keeping up my rules of the game, LOL and he put Yogurt in the cart and on his own realized he didn't say it first sooo starts pulling them out saying yogurt with each container, LOLOL Speech is also incoporated into his horse riding lessons and I hope soon to add that to his ski lessons It took us forever and I mean forever but JESSIE Chris has a heart condition that he never was able to tell us when it was acting up. BUT he does now When his heart starts racing, he will come and get one of us and say HEART Sick Doctor. K, not a complete sentence there BUT who the heck cares He got his point across and very clearly and his need can now be met. Soooo yes Chris is 12 and I really wish for him he was a lot further along in this area BUT on my better days which are usually most i TRULY do believe he will go much further in this area, just slower then I would like. how can I give up when ones told me he would never be here at this age, KWIM?? You guys can only decide for yourselves what is right and what works but for me NOOOO I will never ever give up. I may take a break now and then but we all need breaks My fight has always been speech all the rest just comes into place BUT speech for many reasons he needs an advocate and as long as I breath air I will be it for him Just my thoughts but personally I think that question was out of line from your ST HUGS ~ CC
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Post by Emilysmom on Oct 4, 2005 22:46:26 GMT -5
Jessie~ I am so excited about all the things that are in the works for Jason!! It sounds like you are doing EXACTLY what he needs right now! Who knows where the ST was going with her question.........maybe deep down inside, she was thinking "in case I am not able as his ST to help him progress with his communication skills, will you be ok with that"? Maybe it was about her? Maybe she realizes that Jason needs more than she currently knows how to do? I'm not sure, but I doubt that she saw anything in you that seemed "unaccepting"............just parents who want to do everything in their power to help their son. Please keep doing what you're doing and keep updating us on the progress, because it seems very very promising!
~ I have struggled with the ST's at Emily's school for the past 2 years because they insist that the KEY to her intelligibility is simply getting her to SLOW DOWN and speak louder, rather than continuing to work on what they refer to as "word drills".....or working on single sounds. I was terrified that, if they stopped working on articulation, her progress would stop! And, in the past 2 years, she really has made progress..........but so much room for improvement!!! I certainly have not come to the point where I think enough is enough with Emily. There are times when she amazes me with what she is able to communicate, and other times when I am very worried about her being able to express herself to anyone outside our family. I am encouraged by the fact that we've seen improvements in the last year or so.........as well as the posts here that tell of other kids whose speech improved in the late teen years.
Susan
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Post by TriciaF on Oct 5, 2005 8:48:01 GMT -5
Jessie, I don't know if you have seen this study or not....you have probably researched this subject. But, if not, I thought that this research article ought to be forwarded to Jessie's teachers. Many of them probably believe that people with Ds don't continue to develop language because they believe they can't and stop teaching it. When they see "evidence" maybe they will put more stock in it than the "hearsay" they get from the parent experts. I think you are 100% correct....13 is too young to write off what to expect for Jason. Maybe he won't get to where you would hope......but if they give up on him.......he absolutely won't for sure. It's like I view the fight for inclusion with Patrick, maybe it won't work for him.....but if we don't try it.....it surely won't work. www.sciencedaily.com/releases/2002/10/021017065355.htmThis might be more reader friendly. www.news.wisc.edu/story.php?get=7937Believe in yourself and Jason.......he is one lucky kid to have you looking out for him.
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Post by Jessie on Oct 5, 2005 9:53:29 GMT -5
Thanks everyone for the feedback.
Trisha - I have passed this article on to Jason's ST - thank you!
I don't really know what to think about Jason's teacher and her question about us accepting Jason. I just keep thinking that maybe she didn't really express herself with what she was really thinking or trying to say . . . I don't know, I guess I should give her the benefit of the doubt. To me, if we were not "accepting" of him, he would be in a home (like his natural mother wanted him to be), we wouldn't give a crap about what's on his IEP and we wouldn't do all of the things that we are doing on his behalf. So . . . I just don't see where she is coming up with that doubt about us. Interesting that someone would look at those things that we are pushing for as non-acceptance whereas we look at it as we are completely embracing Jason's disability and trying to help him anyway that we can. That's our job as his parents and we take it very seriously. KWIM?
The only thing I can come up with - and this is a stretch - is that because I'm the stepmom and I'm the one that does most of the talking she thinks I'm overstepping my bounds. Maybe it's simply not something she is comfortable with that I'm not Jason's real parent and she knows I've come into the Ds world late in the game. Bottom line, maybe I just haven't earned her trust or respect yet that I know what I'm talking about?? She always tries to address Brian in those meetings, which I'm ok with, it's a respect issue that he is the natural & legal parent in our situation. What she doesn't realize is that when I give an opinion, suggestion, or whatever, that Brian and I have already agreed upon things before we step foot into the room with them. I may be the one that does most of the talking, but I know that Brian is already in agreement with what I'm saying. But, maybe she thinks I'm just pushing these things onto Brian (such as asking for a new IEP, etc.).
In the article that Trisha posted the link to, it basically says that the traditional way of schooling adolescents with Ds is to taper off on the language skills and to focus more on the daily living skills. Maybe his teacher is just old school in that way and hasn't seen many kids progress after they hit their teens. She has been teaching for 25+ years and has a sister with Ds.
Maybe she just doesn't like the status quo challenged and was trying to in some way defend the school's ST program. Maybe this, maybe that - I don't know!!!! LOL
Thanks again everyone.
Jessie
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