tag:blogger.com,1999:blog-5751462964274808617.post341800103874060037..comments2024-03-13T07:49:23.498-04:00Comments on Down Syndrome New Mama: Oral Motor Mythsds.mamahttp://www.blogger.com/profile/08631570001473985562noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-5751462964274808617.post-71296544943217000632011-08-28T16:11:03.040-04:002011-08-28T16:11:03.040-04:00i would like to say something about the sarah john...i would like to say something about the sarah johnson article. i read it almost two years ago, and i bought the program and am currently using it with my 3 year old boy with DS. i breastfed my son from the moment he was born until he was 1.5 years old. he never drank from bottles of any kind.. i did everything by the book when it came to feeding and oral motor stimulation.. he had an excellent (privately hired) speech pathologist and another excellent occupational therapist (also privately hired) since he was about 4-5 months old.. yet, he has low muscle tone in his tongue and nothing could take that away. we are currently using the sarah johnson's program because i believe in the program (have been using it for over 6 months now).. but i have to disagree with her that those simple feeding instructions will make the problem go away.. he still has his tongue protruding sometimes.. so i guess its a combination of things, but in our case, he was born with this low muscle tone.. exercises can help , but will not make it go away completely. <br />SJAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-73357783769798640322011-01-28T22:38:07.705-05:002011-01-28T22:38:07.705-05:00I must admit your article is very much informatati...I must admit your article is very much informatative and useful. I am now ready to try these simple instruction to improve oral-motor skill levels.Oral Motor and Speech Productshttp://www.edmegastore.com/noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-91472665655740532762010-03-15T14:19:22.432-04:002010-03-15T14:19:22.432-04:00Maybe Liam was just lucky. He doesn't have th...Maybe Liam was just lucky. He doesn't have the protruding tongue, etc. We did feed him with his mouth above his ears, and we didn't have the plastic liners (but my wife did have to pump). But we're happy for the tips, and will tell any newcomers at our local DS parents' society what to watch for.Poppasanhttps://www.blogger.com/profile/07459091437954100698noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-87091382272961804162010-03-03T13:35:17.552-05:002010-03-03T13:35:17.552-05:00I think SRJ is great! We have seen improvements w...I think SRJ is great! We have seen improvements with Brennan since starting to use the straw cup and using some other feeding strategies SRJ suggested (supporting his jaw while spoon feeding, doing chewing exercises, etc.). A little over a year ago (before we met with SRJ) we took Brennan to the dentist and were told he had a high palatal arch. A couple of weeks ago, the same dentist told us he no longer has a high palatal arch. Interesting, isn't it??? It has also improved his tongue retraction.<br /><br />And as for the breastfeeding, I was told by the doctors and nurses soon after Brennan was born that I would most likely not be able to breastfeed him due to his Down syndrome diagnosis. If he were my first child, I may beleived them and not even tried to breastfeed him. But, since he was my 4th, I figured I'd at least try as I had with my others - and it worked! And last year at the NDSC convention, you should have seen all the breastfeeding moms!Sharonhttps://www.blogger.com/profile/17574042485403799310noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-85377941233792846832010-03-01T13:51:59.047-05:002010-03-01T13:51:59.047-05:00This is a great article. Claire doesn't reall...This is a great article. Claire doesn't really have feeding issues, but it still gives me things to think about. I will work on keeping her mouth below her ears, but am unsure of changing bottles as she is eating well and gaining lots of weight. I hate to change what isn't broken. Claire has some tongue thrust but sucks well. The tip of her tongue will protrude sometimes, but not always. Her dr mentioned she does have a high arched palate, but all her drs have remarked on her strong suck too.Melissahttps://www.blogger.com/profile/06474584473012742915noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-65908199049316435222010-02-19T17:47:10.375-05:002010-02-19T17:47:10.375-05:00Keeping MaKenna's mouth below her ears above h...Keeping MaKenna's mouth below her ears above her mouth definitely helped with breastfeeding. I had nursed my son (2.5 years older than MaKenna) over 2 years, so I knew I would figure out a way to get her to successfully breast feed eventually. But until we had cranial sacral therapy work done, she didn't have an efficient suck that would give her enough milk to gain weight. After having her head adjusted, so to speak, MaKenna had a much better suck and hasn't stopped breastfeeding for over 2 years now!<br /><br />Great post! My daughter's speech therapist gave us a copy of this article when MaKenna was first born, over 2 years ago. And today I'm passing it on to a new parent. Thanks for the information, what a great blog you have created, thank you!The Idaho Neumannshttps://www.blogger.com/profile/16932267232133167430noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-53277221015680102882010-02-16T13:30:48.862-05:002010-02-16T13:30:48.862-05:00So what bottles are recommended? Any with liners, ...So what bottles are recommended? Any with liners, or is there a specific brand? Thank you for sharing! I am getting new bottles today :)Angi Bhttps://www.blogger.com/profile/16427012514393579441noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-62985401698184721262010-02-14T20:45:35.009-05:002010-02-14T20:45:35.009-05:00My son refused to nurse after he was born. I was ...My son refused to nurse after he was born. I was admit about nursing after reading this very article and after weeks he finally started nursing. It took about 5 months for him to be really good at it but he is almost 11 months now and still going strong. I used to pump after every feeding to keep my supply up until he was efficient enough on his own. He still has a tongue thrust though and has an open mouth position. We are working on it with a z-vibe.Erinhttps://www.blogger.com/profile/09879135187722664722noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-54991560652756256622010-02-12T14:33:34.701-05:002010-02-12T14:33:34.701-05:00I've never looked in to SRJ's techniques f...I've never looked in to SRJ's techniques for my little guy (now 2). He does have a high arch in the roof of his mouth, but no tongue thrust or seemingly long tongue or any feeding issues. He was able to nurse exclusively after about 2 weeks of serious trying and supplementing with bottle feeding. Each kid is unique to their specific feeding issues. We use sippy cups and straw cups, depending on how much mess we can tolerate at the moment. I recently read that one line of thought in the medical community is to "correct" the high arch so their tongue has a better place to rest for word formation and speech clarity. Interesting, but I don't want anything invasive done... he's managing just fine. Thanks for the post. Many of my friends think SRJ is wonderful.Monica Crumleyhttps://www.blogger.com/profile/11292679754594755040noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-10378920164064701572010-02-11T01:51:51.079-05:002010-02-11T01:51:51.079-05:00We have followed SRJ therapies since my son was a ...We have followed SRJ therapies since my son was a baby. I found her advice to be very helpful and it really helped with early feeding. We still follow these therapies with Cameron who is now 4 and I can personally tell you that it does a lot to help with the open mouth posture and speech.Kimhttps://www.blogger.com/profile/11835707066865156798noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-1461270373970561502010-02-10T22:04:27.492-05:002010-02-10T22:04:27.492-05:00We were lucky to have found an OT who prays to SRJ...We were lucky to have found an OT who prays to SRJ, unlucky in that we didn't find her until Abby was 5.5 mos old. Abby is in the process of learning to switch to the Honey bear- it's been a long process for us. I so wish we had found this therapist earlier- but we are glad to have her for now. We are actually getting a SRJ evaluation in May. I was thrilled to get to meet her last fall when she came to the clinic we go to. <br />Thanks for this post Sandra- there were a few things in there we hadn't gone over yet! <br /><br />Jen- we were told by our OT that sippy cups wouldn't be in Abby's future b/c of the increased risk of aspiration. When a kid drinks from them they have to tip their head back- this also falls into the same category as her comment that when a baby feeds their chin should be lower then there ears. She recommends her honeybear with the flex straw. The difference in the HB vs just a straw sippy cup would be that you can squeeze the liquid into their mouth until they get the concept of sucking the liquid up the straw. At least to start out. In the same respect- I think we will probably try the disposable liners. We use the nipples from those bottles with vent air bottles. Any tips to cue your child to suck on the straw would be appreciated. We seem to be at a standstill with this. We are just now getting lip closure. <br /><br />I also definitely notice a difference in her mouth posture when we are consistent about jaw strengthening excercises. <br /><br />One other tip with the honey bears- we use 1/2 a packet of gerber mangos stirred in with the breastmilk for it. Our OT said you need something with a strong flavor to capture her attention and that she is only getting in the HB- so she'll be motivated to drink from it. She suggests cinnamon but Abby had no preference for it- the mango seems to be what she digs.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-59125235486817692012010-02-10T16:05:05.559-05:002010-02-10T16:05:05.559-05:00Hey,
Hope all is well.
Just went to Talk Tools a...Hey,<br /><br />Hope all is well.<br /><br />Just went to Talk Tools and ordered - I don't know - like 5 products after reading this post.<br /><br />Gotta have the Honey Bear with Flexible Straw.<br /><br />Ahhh!!! xox :)))Far Above Rubieshttps://www.blogger.com/profile/05090466984173332753noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-21373679699977058482010-02-10T00:42:09.483-05:002010-02-10T00:42:09.483-05:00Hm. I'm trying to not allow the mama guilt. ...Hm. I'm trying to not allow the mama guilt. We have always used glass bottles because we felt they were the safest material, and we use the small silicone gerber nipples because he got the best latch on them.<br /><br />He definitely sucks on that bottle when I feed him, not just letting it fill his mouth. <br /><br />So my question would be... can one switch a year into the game, or should I be thinking more about which sippy cup would be most appropriate instead?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-56730577353772394822010-02-08T22:01:18.526-05:002010-02-08T22:01:18.526-05:00I love that article! I found it when Goldie was ab...I love that article! I found it when Goldie was about 2 months, her OT also gave me a copy. We have used her strategies since birth. I used a finger feeder instead of bottles. Goldie does not exhibit the mythical characteristics. Sleep apnea did cause her to breathe through her mouth before her T&A surgery. Great post!Brandiehttps://www.blogger.com/profile/01704697731192764110noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-46228883584472421002010-02-08T19:57:56.883-05:002010-02-08T19:57:56.883-05:00My son has a high-arched narrow palatal vault sinc...My son has a high-arched narrow palatal vault since birth. He had an evaluation when he was baby and the a high-arched narrow palatal vault was there. I bottle fed my son following Sara Rosenfeld-Johnson bottle feeding techniques. When my son is sleeping the tongue tip is out a little bit and I noticed since he was born. There are other issues that may cause this oral behavior as Tongue trust and enlarge tonsils. My son has tongue trust because to factors, trisomy 21 and heritage genes. Hypothyroidism is very common in kids with Trisomy 21, therefore it could be possible that kids with thyroid issues may have enlarge tonsils, causing an open mouth posture. We will check this with the Endocrinologist in our next appointment.Rosahttps://www.blogger.com/profile/02563282224117081649noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-33891594138529523592010-02-08T19:34:46.210-05:002010-02-08T19:34:46.210-05:00Let's see. I would lightly tap Marissa tongue...Let's see. I would lightly tap Marissa tongue & verbally tell her to put her tongue in. She will now pull it back in when I say, "tongue". I did use a method similar to SRJ. Marissa was breast and bottle fed since she, too, had feeding issues associated with low tone and a heart defect. When breast feeding I always held my breast to maintain an steady flow of milk. Bottle feeding, we just did what we were taught & I don't think that followed her "rule". In a nutshell, Marissa's tongue protrusion is limited and she is great about self-monitoring, even at 16 months old!To Love Endlesslyhttps://www.blogger.com/profile/11528196412794557736noreply@blogger.comtag:blogger.com,1999:blog-5751462964274808617.post-26946101718982005472010-02-08T18:40:22.479-05:002010-02-08T18:40:22.479-05:00I didn't know anything about oral issues when ...I didn't know anything about oral issues when we adopted our now 10 month old little guy. I have yet to find a food he won't eat or a texture he won't try. He never sticks out his tongue either. I don't know if that's because he didn't have any "issues", or if they are just that - mythical.Kristinhttps://www.blogger.com/profile/11988590894638135312noreply@blogger.com