tag:blogger.com,1999:blog-7494202605629550918.post8364320468701168745..comments2023-10-04T12:17:48.643-04:00Comments on The Rocking Pony: Fighting FailuresKarenhttp://www.blogger.com/profile/09037928148778848386noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-7494202605629550918.post-67156480703471895702012-07-30T02:13:39.022-04:002012-07-30T02:13:39.022-04:00Yikes. It sounds like you're writing Noah'...Yikes. It sounds like you're writing Noah's story. He's 5 - I've suspected apraxia for about a year. His therapist is "not an expert in apraxia, and because of his Down syndrome, she's just not sure . . ." It's so hard to know whether to just take a step back and give him time or to get aggressive and chase after a voice for him. Thanks for posting your experience - I'm looking forward (sort of, with dred in a way - it would be SOOO much easier if he would just wake up tomorrow speaking. It's hard to go to plan B apraxia when I'm still getting used to plan A Down syndrome) to reading more.<br /><br />Blessings,<br />AlysonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-34917838380601735292008-07-22T08:30:00.000-04:002008-07-22T08:30:00.000-04:00We started using the PECS program with Peanut. He...We started using the PECS program with Peanut. Her teacher is introducing it at school and once she gets past the first couple of stages she will start using it at home as well. Her teacher said studies have shown it has been more successful at encouraging vocalization than sign language. I know many people love sign language and I am not knocking it at all but Hubby and I are concerned Peanut will begin to rely on it and then not talk. Her teacher tends to agree with us. We used it when she was younger and she still uses some signs but we don't encourage more and more signs. In addition, with sign language unless you are familiar with HER signs, you may not know what she is saying. So, if she is being babysat or at the grandparents, they may not understand her. Obviously, it helps that she has her siblings with her most of the time. However, the PECS program uses pictures and eventually she could talk in sentences with the pictures. She would take it with her and everyone recognizes the picture so she will be able to talk to anyone and they would understand. This is not a long term solution, but until she starts speaking with more than uhh and grunts, it is an encouraging alternative for us. I'm excited for school to start back up so she can start working with it again. She was making some progress at the end of last year.Debbie @ Three Weddingshttps://www.blogger.com/profile/11778199494515694006noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-21063758211469744902008-07-20T17:00:00.000-04:002008-07-20T17:00:00.000-04:00You are an amazing woman. Bravo!You are an amazing woman. Bravo!Tootsie Farklepantshttps://www.blogger.com/profile/18336671002327112885noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-53613693059788269612008-07-18T20:59:00.000-04:002008-07-18T20:59:00.000-04:00Keep up the fight. You are so strong and an amazi...Keep up the fight. You are so strong and an amazing spirit. Micah is so fortunate you are his mother!Karenhttps://www.blogger.com/profile/03729243707449806625noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-27151463691416327442008-07-18T19:28:00.000-04:002008-07-18T19:28:00.000-04:00Oh Karen. I often think of your family, and the b...Oh Karen. I often think of your family, and the blessing you were given with Micah. What a gift he is to you and your family, and what a gift you have been for him. I've heard many times before, and I'm beginning to believe it, that our children choose their parents, much before they actually become ours. Micah has most certainly chosen well.just jamiehttps://www.blogger.com/profile/09218649675899000158noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-47127440643466611202008-07-18T18:08:00.000-04:002008-07-18T18:08:00.000-04:00Micah is so lucky to have you!Micah is so lucky to have you!CanadianMamahttps://www.blogger.com/profile/02830797268318076910noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-44953283718996975402008-07-18T17:58:00.000-04:002008-07-18T17:58:00.000-04:00I think as moms we are too hard on ourselves; we'l...I think as moms we are too hard on ourselves; we'll always be second-guessing what we did, or didn't do. We'll always think we could have, should have, done this or that, or started this therapy sooner etc. Don't be too hard on yourself, although it's easier said than done, I know.<BR/><BR/>Have you tried using ASL w/Micah? You said because of his lack of speech you don't know if he knows his colors or letters, but can he point them out to you? Instead of saying "what color is this?" show him two colors and ask "which one is yellow?" that was how I figured out Kayla knew more than I realized before she started speaking. <BR/><BR/>do you have the book Early Communication Skills for kids w/Ds by Libby Kumin? I have it, but haven't even read any of it yet! <BR/><BR/>We also have this DVD: http://www.downsyndromefilms.com/discovery.htm but I have only watched a little bit of it - I could send it to you if you're interested? <BR/><BR/>We also use www.starfall.com with Kayla and I think that really helped her learn her letters and the letter sounds. <BR/><BR/>Good luck with the school; seems like they should be able to provide a communication device to Micah!Michellehttps://www.blogger.com/profile/02441176684416139172noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-9837792023871767192008-07-18T14:41:00.000-04:002008-07-18T14:41:00.000-04:00You are such an amazing mom and writer. You shoul...You are such an amazing mom and writer. You should certainly publish your story. I love that nothing stops you. Good for you! Keep us posted, because I know we're all rooting for you.Momisodeshttps://www.blogger.com/profile/06752015177628948631noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-65725326774365051572008-07-18T12:48:00.000-04:002008-07-18T12:48:00.000-04:00You go girl.I keep coming back here to read what y...You go girl.<BR/><BR/>I keep coming back here to read what you have to say and to keep in touch with Micah. You're an amazing woman, please believe that.<BR/><BR/>I'm in for the bake sale too, and PLEASE let us know how this fight goes, we're all rooting for you.Leannehttps://www.blogger.com/profile/15592530066607069238noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-28943514878316595362008-07-18T11:21:00.000-04:002008-07-18T11:21:00.000-04:00you are the best mom, karen!you are the best mom, karen!jessicahttps://www.blogger.com/profile/02855391682251749463noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-43339109317895772252008-07-18T08:55:00.000-04:002008-07-18T08:55:00.000-04:00Hey, about Flea's comments on the Leapfrog stuff. ...Hey, about Flea's comments on the Leapfrog stuff. We still have ours and if you want it, it's yours!<BR/>I wish I could find the words that would help you through this, but for now, I'm thinking that you ARE his champion and you have other kids that need you too. You are doing a fantastic job giving those kids a real childhood and there's no shame in that. How would you know what you're "supposed" to be doing if agencies that specialize in Downs don't tell you? You go get 'em Mama Bear, but don't bite yourself. You're awesome!imbeingheldhostagehttps://www.blogger.com/profile/00771374087307254969noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-80697366085750370462008-07-17T23:53:00.000-04:002008-07-17T23:53:00.000-04:00My first visit and you and your family, dogs, swea...My first visit and you and your family, dogs, sweaty fat, and loose girls, are right up my alley. Your son is precious and worth being a mama bear over, no apologies. He is a beautiful child. Sounds to me like he communicates with you loud and clear. Never, never, never give up. True then and true now.Karen Deborahhttps://www.blogger.com/profile/05892103639142471595noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-58999089484256445082008-07-17T21:45:00.000-04:002008-07-17T21:45:00.000-04:00You go, Mama Bear!!! Fight the good fight. And don...You go, Mama Bear!!! Fight the good fight. And don't beat yourself up about not learning about it until now. For goodness sake, you can only take on so much at a time. From what I can tell, Micah seems to be doing great. But I understand that it must be soooooo frustrating not to be able to communicate. <BR/><BR/>Good luck kicking you know what with those schools!caramamahttps://www.blogger.com/profile/02327695885346537321noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-53116886024246195172008-07-17T17:52:00.000-04:002008-07-17T17:52:00.000-04:00I could only dream of being as strong as you are! ...I could only <I>dream</I> of being as strong as you are! Don't let them get you down. Just firmly remind them that they have a responsibility as a public school (funded by your taxes) to provide the services Micah needs. I wish you lived in my county because they seem much more accommodating to any family that needs help (and I did see a family with a child that may have had Downs at the same place where Gavin was being evaluated, so I'm not just talking about kids with less severe speech/developmental delays).<BR/>And if your school system still balks? Well, you know I'm always available for depositing flaming bags of poop on doorsteps of those who dis Micah (in fact, still waiting to hear if you need my services for that other individual we were talking about the other night...ha ha).<BR/><BR/>One other observation: Micah is considered to have low muscle tone? Really? I mean, we've seen him naked and he looks like the size and build of Gavin. And if he can scale a dang 6-foot fence, he's got WAY more muscle tone than me! :)<BR/><BR/>Give him a hug from us...we can't wait to meet him (or you. or your other kids. or Sam. or the dogs...especially Tink. or even the Cavalier That Wouldn't Die).Wineplzhttps://www.blogger.com/profile/12412881827548705342noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-22735699183477457712008-07-17T16:48:00.000-04:002008-07-17T16:48:00.000-04:00Good for you! I imagine at times it can be so ove...Good for you! I imagine at times it can be so overwhelming! But you're such a great mom -- Micah's champion -- so I'll know you'll do what needs to be done for him.Madame Queenhttps://www.blogger.com/profile/05879021662076403965noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-15755467462967819132008-07-17T14:55:00.000-04:002008-07-17T14:55:00.000-04:00The LAST thing you are is a failure. There is no o...The LAST thing you are is a failure. There is no one I know (and I think I know you fairly well even if it's not IRL), no parent, no family who is better for that boy than the ones he has.Cecily Rhttps://www.blogger.com/profile/01833641996572085518noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-5583509955037745072008-07-17T13:46:00.000-04:002008-07-17T13:46:00.000-04:00Good for you, mama. You keep on fighting for that ...Good for you, mama. You keep on fighting for that boy ... just looking at that picture there shows there's more going on in there behind his eyes! Good luck - and keep at it!KGhttps://www.blogger.com/profile/10236206776336550381noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-90724900606244631022008-07-17T13:33:00.000-04:002008-07-17T13:33:00.000-04:00Max just turned 7 last month. At the age of 5 he ...Max just turned 7 last month. At the age of 5 he maybe had a couple or so simple words- the important ones like- NO! He still does not really "talk." He does have several word now but usually only 1 at a time. Even then, I don't know if people could understand him if they didn't know him. He recently said MOM- and now says it ALL the time! He tries so hard to say stuff and repeat words. But there is a break down somewhere along the line. He does have aprixia- Micah may too. It's the motor planning issues.<BR/><BR/>At school Max does have a communication device. He does not really use it though. He knows it is different from everyone else. His is a device for either 4 on up to 16(?) pictures. I think he has 8 in it right now. He pushes the button and it says the word or sentence. It is recorded (obviously) and the pictures are personalized. Everything on it can be changed to meet his needs. Towards the end of the school year they were going to try it again with him. He loves OT and all the activities she does. So they decided to start off in there with it. He used it every time - or so they tell me! <BR/><BR/>I had no problems getting it for him- actually they recommended it. They asked me for permission. <BR/><BR/>Good luck on finding something. But remember Micah may have his opinions about it and not use it!! I know how frustrating it is when they can't talk. It does make you wonder what they are thinking inside that little head of theirs. <BR/><BR/>Oh, and does Micah use sign? Max uses lots of signs and that has helped SO much. It also helps with colors and counting, etc. I know that Max knows all his colors, most if not all letters, and is able to somewhat count all with signs. He has started on sight words and so far so doing pretty well.JennyHhttps://www.blogger.com/profile/01016390364789296413noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-72401782516699420702008-07-17T11:29:00.000-04:002008-07-17T11:29:00.000-04:001. You ROCK.2. I can only imagine how frustrating ...1. You ROCK.<BR/><BR/>2. I can only imagine how frustrating this whole thing is for you. Having met Micah, I know first-hand that he very obviously has the gears moving at top speed. He most definitely understands his world, and the fact that he hasn't flipped that switch to start telling you about it has to be exhausting.Burgh Babyhttps://www.blogger.com/profile/09123901504643963583noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-11455449861511870592008-07-17T09:30:00.000-04:002008-07-17T09:30:00.000-04:00Yeah for you!! Your school district has no idea w...Yeah for you!! Your school district has no idea what a force you are :)<BR/><BR/>My neighbor found that almost all her battles with school were instantly won when a lawyer from The Arc wrote a letter. It really was a friendly letter just reminding the school of her boy's rights. But because it came from a lawyer and it came from a strong organization, the school IMMEDIATELY acquiesced and found the resources her son needed. She had only one conversation with a representative from The Arc and that triggered the letter.Caution/Lisahttps://www.blogger.com/profile/11172990197662644455noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-61240087448313746092008-07-17T09:24:00.000-04:002008-07-17T09:24:00.000-04:00You are Micah's champion, and you continue to insp...You are Micah's champion, and you continue to inspire all of us who visit your blog.<BR/><BR/>God bless.Maria (also Bia)https://www.blogger.com/profile/10915816897999091636noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-36680309784700822422008-07-17T09:01:00.000-04:002008-07-17T09:01:00.000-04:00Karen, you're not failure. AT ALL. You get your d...Karen, you're not failure. AT ALL. <BR/>You get your dander up; Micah's mommy is on the rampage! Good for you - Micah couldn't ask for a better mom or advocate. I hope the device sparks something for him.Karen MEGhttps://www.blogger.com/profile/10834425321020756655noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-17867794171825512602008-07-17T08:45:00.000-04:002008-07-17T08:45:00.000-04:00Have you tried any of the Leap Frog line for Micah...Have you tried any of the Leap Frog line for Micah? I've given all of ours away prior to moving or I'd ship them. Don't know how much they'd help, but you might take Micah to WalMart and let him play with some of them, see if it sparks anything.Fleahttps://www.blogger.com/profile/03412755038083750088noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-71223732168614495002008-07-17T08:37:00.000-04:002008-07-17T08:37:00.000-04:00I was subbing in preschool quite a bit the last ye...I was subbing in preschool quite a bit the last year and there were a couple of the devices. They were fairly simple - something of a cross between an old Speak'n'Spell and Leap Frog's spelling device. It was great for the kids who used it.Fleahttps://www.blogger.com/profile/03412755038083750088noreply@blogger.comtag:blogger.com,1999:blog-7494202605629550918.post-86750982349073907632008-07-17T08:24:00.000-04:002008-07-17T08:24:00.000-04:00Keep fighting, girl! I don't know anything about ...Keep fighting, girl! I don't know anything about these devices, but if they make communicating even a tiny bit eaiser for him, then they are worth the battle. I understand the frustration of fighting, though - after mr b's accident, we had to fight for everything and it was infuriating.Ginahttps://www.blogger.com/profile/00684328990767140199noreply@blogger.com