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Post by chasesmom on Mar 23, 2007 16:03:54 GMT -5
He had his swallow study today and I should have went where Laura told me to go because the ST or whatever she was did little in the way of help. They had Chase eat applesauce with barium in it, a cookie with the applesauce concoction on it, drink juice with barium in it and did an ongoing type of xray while he was doing this and said he swallows fine. She said it is his chewing, he uses his tongue to push his food around and swallow which is what makes him choke and gag. I asked what I can do to teach him to chew. Her response? You can't do anything, this population has this problem. All you can do is keep him away from foods that are hard for a person to swallow. PLEEEEEEZZZZZZZE! She said dont give him anything that isnt the same consistancy, examples being, chicken noodle soup, it is both broth and noodles, that is a no no, because he doesnt know how to keep the juice in his mouth while chewing the noodles and instead would try to swallow the broth while chewing and choke, grapes, oranges, grapefruit, the same thing because they produce juice that he would have to swallow while still chewing and that would make him choke, french fries are out also as well as never give him a salad from now on and IF I give him meat, GRIND it up for him, also things like pizza, tacos, anything requiring chewing!!! Get outta here, is she insane? he is 14 years old and she wants me to start pureeing his foods for him? You do all know where that food will end up right? The same exact place I would put it if someone tried to make me eat it. There has to be a way to make him able to chew better for goodness sakes! I have NEVER heard of people with DS not being able to chew like she insisted! What a waste of my time. Okay I am raving here, Jeff is right, LOL! Where is Laura, I need your expertise in this because Chase and I both see this is ridiculous. She did say that she feels his pneumonia last year was from him aspirating due to choking so I have to take part of what she said very serious and that means he HAS to learn to chew. He does take little bites now, so help guys...all suggestions appreciated, he is hard to work with but I'll try anything at this point short of pureeing his food. That is an automatic "IT WON'T WORK" kinda thing. hugs, Robin
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Post by Becky on Mar 23, 2007 18:13:29 GMT -5
Justin does not chew his food so his ST is working with him on it, she see's him twice a week and one of the days she has him is spent on working on his chewing she has him chew on taffy, its is a long piece so she can hang on to it so he doesnt choke and she allso wroks with him with his tongue, he doesnt work it right either, at home we still sometimes use the cheese cloth, that works we put hard stuff in it and he chews away on it and that way if he gets small pieces off he wont choke.
Godd luck
Becky
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Post by Connie on Mar 23, 2007 18:38:48 GMT -5
Robin, I think your boat will capsize with everyone that is going to be in it!! Take for example ME and COLLIN. Tonight I had to tell him to spit his food in the trash because 1 he didnot like the texture and 2 would not chew it, he would just try and mush it in the top of his mouth and started choking everytime he tried to swallow. Connie
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Post by ALLISA on Mar 23, 2007 18:41:42 GMT -5
hhmmmmm Robin....lots to think on.....or should I say chew over..... Sorry... Yes, her explainaiton that he can just never eat certain foods again sounds pretty out there......my impression is that she read it in a book and has never really worked with anyone.... Erin sounds very similar to Chase....and all the food you listed DO give her "problems"......I cut VERY small....even pizza is cut into about 30 pieces per slice and we work on ONE thing in the mouth at a time. When she was little I'd give her the combo meals by Gerber and she would always Strain her food.....all the noodles and veggies would come right out.....only one food group at a time sits well with her ! I'll search around the web and see what I can dig up for you.....
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Post by laurasnowbird on Mar 23, 2007 19:35:43 GMT -5
Oh Robin, I'm so sorry that you are faced with this. I have to agree with your rather useless ST on a few points though. It is VERY common in the DS population - since I've learned what to look for, I'm amazed at how often I see it. And she is also right about mixed textures, at least for the short term. She is also making a reasonable assertion that his pneumonia may have been caused in part by this problem. Now to the raving part. I am shocked and furious that her answer to you was to tell you to go home and puree his food, and that he'll never chew. What a load of BULLSH*T!!!!!!!! He CAN be taught to chew, and I would start by getting a copy of that report (if it can be called that) and calling an immediate IEP. This is a health and safety issue that needs to be addressed pronto. Chase's meals need to be supervised until he is better able to chew his food. If they balk in any way, notify them in writing that he is at risk for choking due to his inability to properly chew his food, and that the liability is all theirs if he does. I just shot off an e-mail to Lori Overland to see if she had any thoughts. I don't know who is trained in oral motor work in this area. Honestly, we haven't had any luck finding anyone with skill in this area, which is why we work with Lori, and made the trip to Connecticut to get some more intense help last summer. And it was worth every penny. I do know that there is a clinic in Grand Rapids that works on feeding. I'll make some calls in the morning. Oh crap, tomorrow's Saturday. Okay, then Monday. I just don't know how much they know over there. In Michigan, in the school arena, the OT's work on feeding. There have been some OTs trained by Lori, she was here in September doing some in-service for Clinton County in September of '05, I think it was. Let me see what I can find out from her. Perhaps there is someone local that she feels would be of assistance. You know that I will do whatever I can to help, and if nothing else, I can show you the things that we have learned from Lori. You aren't that far away!!! It's probably like practicing ST without a license though, LOL!!! OKay, I am rambling, but it is primarily because I am so incensed by this entire subject. HUGS to you girlfriend, we'll find a way to get Chase some help.
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Post by MB on Mar 23, 2007 19:52:09 GMT -5
Treading lightly here......what about a Speech and Language Pathologist who is going for their doctorate doing it on Chase's chewing issue? Nearby university and a doctoral student who has access to the experts in the field? Cost: free! Expertise: the best!
mb
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Post by laurasnowbird on Mar 23, 2007 20:33:14 GMT -5
Great idea MB, but it has some drawbacks. The biggie is this: the American Speech and Hearing Association has thus far not included oral motor therapy in its curriculum. It is an emerging field, which is why so many parents are unaware that their child has a problem. It is pretty simple, the "expert" speech and language pathologists aren't getting trained in it and have difficulty identifying it themselves.
Sara Rosenfeld-Johnson, who is one of the "gurus" of oral-motor therapy has even asked parents to write letters to ASHA. I did that a couple of years ago, when she made that request. I've not heard from her that ASHA has budged in its stance as it relates to oral-motor. I think the groundswell is going to have to come from those of us who are living it, and seeking out services for our kids. The old supply and demand issue, KWIM? If we demand, they'll eventually supply.
That is a great example of thinking outside the box, though. I'm going to look for a way to apply it to something else!!
I know that Lori has done trainings in Michigan, but the problem remains that attending a two day session, even learning from someone as incredibly talented as Lori or Sara R-J doesn't make someone proficient in oral-motor. I attended the two-day training myself, at my own expense, and sat among the speech therapists who were ENTHRALLED at what she had to teach, but were going to need a lot of hands-on and further teaching to be competent at it.
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Post by MB on Mar 23, 2007 20:36:07 GMT -5
Bummer news. But, how about applying for a grant from Chase's local Ds association to attend one of the training sessions?
mb
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Post by CC on Mar 23, 2007 20:46:04 GMT -5
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Post by laurasnowbird on Mar 23, 2007 20:50:54 GMT -5
Great link, CC. And it discusses some of the things we talked about earlier in Kelly's thread. How certain foods "feel" in your mouth. Rice is one of the things that Chase won't eat (lots of kids with DS won't) because of the way it "scatters" in your mouth!
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Post by laurasnowbird on Mar 23, 2007 21:07:03 GMT -5
You know what? This is also a great opportunity to plug the National Down Syndrome Congress Convention. MB has all the details, LOL! If you haven't ever been to one, I highly recommend them.
Ethan was only eight months old when we first attended. It was at that convention that I met Sara Rosenfeld-Johnson and learned about oral-motor therapy. Within two months, we had met her for an eval and program plan. When we got to solids and Ethan gagged and vomited, Sara hooked me up with Lori Overland, and said she was the guru on feeding sensory issues. I was reluctant to see Lori because I had such confidence in Sara. Sara assured me that Lori was the person we needed, and she was soooooo right! We have worked on oral-motor therapy ever since Ethan was 10 months old, and he is still a work in progress, but he has made TONS of gains.
Ethan's progress was so notable that our school district sent some OTs to the training, and purchased the training videos. Many, many children are getting oral motor therapy in our school at an EARLY age (birth to three!) in large part because we went to that first NDSC convention. Oral-motor therapy is now an accepted and valued part of our special ed programs!
We CAN make a difference.
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Post by chasesmom on Mar 24, 2007 15:38:56 GMT -5
Thank you everyone for the great ideas and suggestions!!!!!!! I appreciate it so much. I am lost so you guys are so helpful here. MB, sad but true, we do not even have a local DS association here. We live in a small city and had one but it disbanded about ten years ago because we ended up with three or four of the same people every tiime and I guess they thought we werent worth it. I have wayyyyy too much on my plate to even consider starting one up. I would however LOVE to go to a NDSC and someday I will, especially if they have info that would benefit my teaching Chase to chew!!!! So MB has the info This isnt the one coming up in July is it? I could never make it $$ wise but maybe next year? If it is close? Laura, I will wait to hear if you find any one close to where I live to help with the chewing problem (or should I say non chewing) and in the meantime I will ask around and see if anyone knows anything or anyone that could help Chase. Hugs to you all and keep your fingers crossed for Wednesday (the ENT) and Thursday night (the sleep study) hugs, Robin
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Post by MB on Mar 24, 2007 16:43:27 GMT -5
The NDSC is coming up in August. August 3-5 in Kansas City. There is a pre-conference on August 2nd which is an extra charge and would probably benefit you.
As far as attending, where there is a will, there is a way! Here's what I would do.
1. Make your reservation at the Westin Crown Center in KC for convention rate of $109 per night. You can always cancel if funding does not come through, but you cannot get a room later. I assume no fee for canceling.
2. Contact NDSC for a scholarship. I would absolutely recommend asking for the scholarship based upon Chase's multiple diagnosis and then because of temporary financial need. Dual diagnosis is a hot topic this year.
3. Contact your local Knights of Columbus for scholarship assistance. Almost every Catholic parish has a chapter. They have always been committed to persons with developmental disabilities. I would breakdown the costs into categories. You could list preconference, registration, flight, transfers, hotel and meals. Ask if they would consider covering any of the categories.
4. Contact Lions and Rotary. They both contribute to our local organization. Please add a picture of Chase, the website for NDSC and the list of categories to your letter. Offer to talk at one of their meetings about the impact the convention had on you and Chase. Offer to turn in all receipts.
5. Your own church congregation might be interested in sending you. Go through your pastor to see if he/she has a benfactor waiting in the wings to help. Many church communities have persons who like to help anonymously.
6. Most hospitals have foundation offices and a director of development. Same letter you would use for Rotary. Ask them to pull Chase's chart to see how often you have used their services as a result of Chase's dual diagnosis.
7. Your hospital may have a woman's auxiliary. Same letter.
8. Junior League or other similiar women's organization. Letter should be customized to let them know that there is no local organization from which to receive this information.
9. Your local ARC (Association for Retarded Citizens) may want to send you if you are willing to report back with the latest information.
10. Your local McDonald's. McDonald's has had very successful commercials featuring persons with Ds. Same letter. Same categories and thanking them for their continued support of persons with Ds. Offer to provide a picture of Chase to the local paper and the story of their generosity.
I feel like I may have stepped on toes here AGAIN, but funding requests come across my boardroom table all the time. We take them seriously and do whatever we can to help. We are bound by our bylaws to serve only our membership with our monies. After being involved for three years, I am astounded by the number of people who say yes to our requests for funding as soon as we say Down syndrome.
You have nothing to lose.
mb
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Post by laurasnowbird on Mar 24, 2007 17:17:04 GMT -5
Awesome, MB, and I sincerely hope that everyone takes your advice in the spirit in which it was offered.
Another possibility, your local Kiwanis club. I belonged to ours as a member and officer for years, and we were willing to consider any request that benefitted a child, as that was who our organization was pledged to assist.
If Chase has Children's Special Health Care insurance, they may also kick in some monies. If he doesn't have it, it would be a good idea to apply for it. They pay only for specialty health care, but they have covered any co-pays that our Blue Cross hasn't covered, as well as prescription co-pays for meds that are related to Ethan's qualifying diagnoses. They have also covered him for therapies that our BCBS wouldn't touch!
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Post by Cbean on Mar 24, 2007 17:22:20 GMT -5
And if you're a Catholic, the Knights of Colombus too! All of our KofC's get so involved with the ARC chapters, etc.
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