tag:blogger.com,1999:blog-6447892187739221541.comments2023-07-29T03:49:14.809-04:00Apraxia-KIDS - Every Child Deserves a VoiceApraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.comBlogger150125tag:blogger.com,1999:blog-6447892187739221541.post-71248764601038574592013-12-27T08:01:39.745-05:002013-12-27T08:01:39.745-05:00Mary Beth Price, thank you for your experience and...Mary Beth Price, thank you for your experience and for sharing it with us. I have a daughter, 3, newly diagnosed with CAS and it's overwhelming to try and understand what therapy should look like and how much of it she should have. They have told me although she is "severe" (I'm trying to understand and interpret the results from her initial evaluation) they are offering one 20 minute session per week. It seems obvious after reading this article and what you have said, this is just not enough. Thank you!!<br /><br />Gwen Owens<br />Grants Pass, OregonGwenhttps://www.blogger.com/profile/12730466866699666093noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-78830948891018473852013-12-22T23:39:51.337-05:002013-12-22T23:39:51.337-05:00Like you I have I have a son with apraxia, but whi...Like you I have I have a son with apraxia, but while many of you are just beginning your journey, mine has been going on for a while. When he was first diagnosed it was recommended that we send him to a special school that dealt with children who had apraxia ( St. Rita's school for the deaf) but we dug our heels into the ground and said no, after all you don't know what your child is capable of. We were told he would fall further and further behind his peers in his classwork. We also noticed that his siblings understood him better than adults and like you I also had fears. In your own home you can protect them, but outside in the real world , well that's a different story. What happens if we were out and he got separated from us. Who would understand him. His speech at times was hard to understand and if he was upset then good luck. . Well as I wrote in the beginning while many of you are just starting your journey, mine has been going on for a while. My son Ryan is now 15 a freshman in high school. As for falling behind his peers, he's in all regular classes and maintains a 3.36 gpa. For the most part people understand what he says if they don't he has a phone that has text to talk. Like Danny Ryan found his voice. Good Luck to all of you who are just now starting your journey. May your child find his/her voice<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-89021215135382830882013-12-21T01:50:13.120-05:002013-12-21T01:50:13.120-05:00Thank you so much for sharing your story. I found ...Thank you so much for sharing your story. I found it very touching and it moved me to tears. I have all the same fears for my son (the youngest of 4) who was recently diagnosed at age 3. It was so reassuring to read your storyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-30524296740571688322013-12-19T20:20:42.913-05:002013-12-19T20:20:42.913-05:00I cannot thank you enough for your story and for s...I cannot thank you enough for your story and for sharing Danny's. My son Jack is six years old and has CAS as well. He started kindergarten this year (we repeated preschool). We are also in Massachusetts and I believe we saw your family at the Walk for Apraxia with the ties on your shirts (We were The Cracker Jack Team). :) I worry daily about how he is doing in school full days. I know the teachers and children have a hard time understanding him a lot and it breaks my heart. Your comment about "feeling safe" at preschool is something I can relate to. I wanted to keep Jack there forever. :) We have followed Danny's story since we first heard about it locally. To see you guys on Ellen was wonderful. Danny reminds me a lot of Jack. If Jack could he would wear his police officers uniform everywhere he goes. :) They are special kids with hearts of gold and we need more people like them in this world. :)Marci Dohertynoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-63472327636326586742013-12-19T09:42:42.286-05:002013-12-19T09:42:42.286-05:00My son Wyatt is in kindergarten again this year......My son Wyatt is in kindergarten again this year...he has speech apraxia. He got bullied exextremely bad last year. We almost took him out of school. Dannys story is almost exactly like Wyatts story. It brings tears down my cheeks to realize that some people do care. Thank you for sharing this story I am glad that others do understand my struggles! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-32987724203805612022013-12-18T21:31:18.029-05:002013-12-18T21:31:18.029-05:00I love this. What a supportive & caring sister...I love this. What a supportive & caring sister. Thank you for sharing this.Jeffrey Marlerhttp://aspireinterventions.comnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-17823691659979445612013-11-03T23:21:20.918-05:002013-11-03T23:21:20.918-05:00we have struggled with getting proper speech treat...we have struggled with getting proper speech treatment for our son. while effective TX is out there, government officials such as Obama, have publicly voiced their beluefs that disabled children are low on the totem pole, instead of equals to us. My son is disabled and I would not trade him for a normal child. I believe he deserves effective treatment and this will not happen unless the goverment supports grants to help with his condition or we come up with funds somehow. Meanwhile, I teach him to stand up for himself, let people know he has a harder time speeching, but he can and wants to do things the other kids do. No disabled child should feel ashamed of who they are. God does not make mistakes anf our children are no exception to that.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-36956248227372526802013-10-16T19:48:30.829-04:002013-10-16T19:48:30.829-04:00My questions goes out to parents with older CA kid...My questions goes out to parents with older CA kids in school. It's great to connect with other parents of CAS kids - my Son is 4.5 and took a huge leap into speaking over the last few months. Ty has made huge inroads with speech this last year and is approx. 60% understandable now and increasing everyday. I would like to know what problems he may face as an older kid in school with reading, writing and learning? Should we look at software to help him communicate or is it redundant if he can speak? It seems redundant to me but I can't see everything he will face in the future. Janenoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-12171998950777235212013-09-16T08:12:30.973-04:002013-09-16T08:12:30.973-04:00Yes absolutely right ...every child deserve a voic...Yes absolutely right ...every child deserve a voice..Haven Househttp://www.havenhousesoberliving.com/noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-29417397022509467582013-08-27T12:49:27.371-04:002013-08-27T12:49:27.371-04:00I went into preterm labor at 18 weeks with my son,...I went into preterm labor at 18 weeks with my son, who has apraxia. I will always believe that it was the various medicines they gave me to keep me pregnant that caused harm to him, thus causing the apraxia. Of course, if the medicines weren't given to me, he, most likely, would have been miscarried.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-13493418857438285152013-05-13T20:27:20.109-04:002013-05-13T20:27:20.109-04:00Sign Language (ASL) has been a great gift for my s...Sign Language (ASL) has been a great gift for my son. He can fully express himself in a language that doesn't emphasize his weaknesses. I really think signing is the reason he is such a pleasant, joyful child. We simply haven't experienced the frustration and disappointment that I hear many parents of apraxic children talking about. Shanna Maehttps://www.blogger.com/profile/04089149455109885469noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-63807880624512387842013-04-05T10:36:14.024-04:002013-04-05T10:36:14.024-04:00my son was one of the children that participated i...my son was one of the children that participated in this study and benefited from it. I hope Dr Preston is successful with his funding application and that more children get this opportunity to resolve those last few sounds that impact intelligibility so much.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-11076948660688303532013-01-13T16:35:51.983-05:002013-01-13T16:35:51.983-05:00I haven't done a study on this but in my exper...I haven't done a study on this but in my experience with preschoolers with CAS, more frequent but shorter sessions work best. I am currently seeing one girl 3X/week for 20-25 minutes per session.Mary Beth Pricehttp://yahoo.comnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-60846400691912240242013-01-12T07:14:58.481-05:002013-01-12T07:14:58.481-05:00Has this research been published anywhere? I reall...Has this research been published anywhere? I really would like more details. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-67888905474862542112012-12-13T22:45:48.546-05:002012-12-13T22:45:48.546-05:00Hope Dr. Preston recieves his federal fundingHope Dr. Preston recieves his federal fundingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-31610086056110018752012-07-01T00:37:27.667-04:002012-07-01T00:37:27.667-04:00my son loves cut the rope app. practicing me or m...my son loves cut the rope app. practicing me or my and cut. He loves the ipad at speech!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-45340466828137130402012-06-03T03:47:25.151-04:002012-06-03T03:47:25.151-04:00These ideas are very helpful, my son (2.5) has jus...These ideas are very helpful, my son (2.5) has just been diagnosed with CAS and we are still trying to take it all in, any other suggestions would be greatly appreciated as we are very new to all of this. Thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-6296555128093202082012-05-27T23:54:54.242-04:002012-05-27T23:54:54.242-04:00My son just turned 4 yrs old and has been evaluate...My son just turned 4 yrs old and has been evaluated twice and although both places said they thought he has CAS neither one of them properly diagnosed him. I know this is a hard thing to diagnose but still is quite annoying. I can understand about 30 to 50% of what he says, everyone else about 10%. He started in a program for disabled children about 7 months ago where he recieves group therapy including speech, language, and occupational therapys. I have cerainly seen progress but it is such a slow process. We are waiting for our HMO to authorize him going to one on one therapy. He is just starting to get frustrated when I can't understand him and it just breaks my heart. We do not know what caused this and their just don't seem to be enough research done to know what to expect. I am very scared that he will never be able to talk on his own without someone their to help him. He can not do sign language because he has issues with his fine motor skills. He also has sever allergies and sensory problems. He is absolutely terrified of loud noises. We can not even flush a toilet around him and trying to cut his hair is just impossible. I have an appointment coming up with a new doctor who is sapposed to be able to diagnose him. I don't understand what could have happened to him, he was just fine untill 18 months old when he swelled up one day and we took him to the ER and they said they did not see anything wrong with him. They looked at us like we were crazy when we told him that he was not holding his hands right and that he was not talking. well now 3 yrs later and he still can not even make a fist and has not talked correctly since that day. He could say grandmom, daddy, mommy, bottle, grandad all the normal words with the right syllables and then he went to gama and da, ma, all babble like an infant again. and then he started makking up words or adding different sounds to the words like bo for no and bamber for amber. He still does this and sometimes makes up words entirely. I am so scared that if I can not figure out what caused this I can not make sure it does not happen again and this will start all over. I don't think people talk about how it affects the parents. I am so paranoid when it comes to my kids now. I am constantly scared that something is going to happen to them. I can not even sleep at night I am so worried and the guilt just eats me alive. I should know what happened to him and I should have been able to prevent it. What do I tell him about why he is different and what do I say when I just can't seem to get what he is saying which is happening more and more now cuz his vocabulary is growing at such a more rapid rate than his speech. He is sever and what if he never can talk or communicate? He has never been to a friends house or anywhere without me cuz I will not put him in that situation of not being able to communicate with his caregivers. He sees his sister going places and wants to go and I just have to tell hi he can't. It is just not fair and my heart breaks for him everyday. I just want him to be normal and not have to go through all this stuff. He has such a hard life and he is only 4. and he is noticing now and I do not know what to say to him. I don't want him to be labeled. Any ideas or tips? I do the best I can but I find myself second guessing everything when it comes to him. i just want to do the right thing. and it makes it even harder when I don't have all the money to just send him to the best doctors all the time like he deserves. If i did not have to wait on HMO's and medicaid all the time and had the money to get him in one on one therapy a long time ago maybe he would have made more progress by now. It is just so hard cuz I love him so much and I want whats best for him.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-36588849037649284952012-05-19T12:04:27.258-04:002012-05-19T12:04:27.258-04:00You are a brave brave mommy. I just wanted to say...You are a brave brave mommy. I just wanted to say thank you for your example of persistence. And for your sense of humor - for "failing with flying colors". :) Lol I've read some stories on here that are just so sad, where the system has failed them horribly. You are right - the whole "blame the parents" thing is an atrocity that's used for a lot of things to cover up the agency/ school's inadequacy and laziness. Your daughters will be very intelligent. Genetics usually gives us an advantage somehow, so it may be that nonverbal communication is her strength or increased time to learn communication skills will benefit her. Another "myth" is that they don't need any help, it's just late talking... you know as well as all mommies on here by now, they are missing out on crucial learning years and it causes problems with their self-esteem and healthy positive bonding with family and peers. But I have used the "she's just a late talker" comment to my advantage when someone obviously wants to blame it on the family. Meet stupid with stupid, I guess.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-61988704836840189702012-04-12T22:14:00.137-04:002012-04-12T22:14:00.137-04:00agreed- I tell the folks at my son's school th...agreed- I tell the folks at my son's school that I am not only his best advocate, but I am his ONLY advocate. We struggle with getting PROMPT therapy for my 7 YO son's Apraxia issues at his school; they don't see it as a problem and so we self-pay for a private therapist since we have to fight our insurance company too (they said NO speech services for anyone over the age of 7-can you believe that??)...I'm just hoping that in one more year, we will be kicking Apraxia's butt out of our lives. We've been doing speech therapy for 2 years and have seen leaps and bounds so I am encouraged but know we still have ways to go. I tease people and tell them that my son goes to public school and then comes home and is home-schooled by his mama :) Our job is never done! Fight for everything on the IEP-my pediatrician grants my every wish-he knows how important it is to get services while our kids are young! One NO deserves an appeal until you get a YES! I do it all the time; I never take NO for an answer; after all, aren't I a taxpayer who deserves to get services at our public schools??!! Teachers love to be trained and use the skills they went to school for; it's the administrators who always try to deny stuff. They'll wear down eventually if you go in armed with paperwork-all kids who need help need an IEP until high school if you ask me :)kate bluehttps://www.blogger.com/profile/02456289047647548081noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-59856917791321339662012-04-12T21:59:37.343-04:002012-04-12T21:59:37.343-04:00we've experienced kind of the same situations ...we've experienced kind of the same situations and I truly believe in my heart that I feel it more than my son does; due to his developmental delays, he never notices when people are mean to him. It just encourages me to keep trudging along to his various therapies all in the hopes that ONE DAY they'll (the apraxia and the delays) all be in the past. TFS! Good to know I'm not alone in my thoughts :)kate bluehttps://www.blogger.com/profile/02456289047647548081noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-73199731668195403992012-04-06T17:10:36.725-04:002012-04-06T17:10:36.725-04:00Congrats to Luke. My son has also excelled after d...Congrats to Luke. My son has also excelled after dealing with speach apraxia. He is currently a 20yr old college student who has run several marathons and ultra marathons. Great stories for scared parents and kids.Rick A.noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-70909239019970299372012-03-22T15:05:04.669-04:002012-03-22T15:05:04.669-04:00I'm having a hard time with the ipad and my so...I'm having a hard time with the ipad and my son - he just wants to play by himself, and hits the home button to get out of any app i want to use with him. It would be really helpful if you could address this issue in using the ipad for speech therapyMelissa Mhttps://www.blogger.com/profile/09046716949319231916noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-65832768803236931352012-03-21T20:44:38.370-04:002012-03-21T20:44:38.370-04:00David thank u for your blog ,,i have a 4 year old ...David thank u for your blog ,,i have a 4 year old son with apraxia and just today i was talking to my sister about my son fitting in,and if he would be made fun of you help ease some of my concerns,thank youginnyhttps://www.blogger.com/profile/10431208285763344023noreply@blogger.comtag:blogger.com,1999:blog-6447892187739221541.post-82516749811248927532012-03-19T06:33:22.786-04:002012-03-19T06:33:22.786-04:00Yes, these 2 issues can be related. My 4 and a hal...Yes, these 2 issues can be related. My 4 and a half yr old also has severe apraxia and learnig issues...but is very smart, as weird as that might sound. He learned all the colors, the alphabet, the words 1-10 and #'s 1-20 before he learned to do simple things like cut with a scissors. Along with the apraxia he also has partial agenesis of the corpus collosum and a benign tumor in his brainAnonymousnoreply@blogger.com