Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 All I can think to say is thank you for sharing your hope. Enjoy your son's wonderful day of his birth. > > As some of you older timers know, my apraxic son turned 8 today. It > has come without angst, without issue - and I want to pass that onto > today's newbies. > > At 2, my son had no words - he said " da " for everything, and it was > hard to get that out of him. He was clearly VERY strong, but > couldn't quite figure out how to crawl right, and stood and ran at > 11 mos instead. He also couldn't figure out how to roll himself > over, but did so by accident fairly frequently. No one was really > concerned because he was so clearly healthy - a whopping 24# at 4 > mos. and off the charts huge on every scale there was. No failure > to thrive, here. You know how most babies lose weight when their > breast fed? Not mine... So, no one was really concerned - he was > healthy, happy, and doing MOST things on time. > > Then, when I realized that he was, in fact, pretty different from > other 2 year olds, I took him into my doc who said he wasn't really > worried, but to get an eval if I wanted. I did, and got one of the > world's worst therapists. We just kept telling ourselves that it > might not be helping him, but it wasn't hurting him... Then the > therapist basically told me that he was apraxic AND dumb - > potentially retarded and that I was a deluded mother. How could I > POSSIBLY think he knew his letters and colors at 2?!?? > > Got a new therapist who rocked (NEVER NEVER NEVER NEVER question > getting a new therapist - if you don't think yours is working, GET A > NEW ONE!). She worked with him very well and, even when he was > tired, she gave him the right amount of praise and kept him > working. Geez! We spent MONTHS on S,F and Th. > > At 5.5 he was discharged from ST - kind of a surprise for me as his > pronunciation wasn't perfect, but it was, in fact, perfectly age > appropriate (he still struggled with Th, but could correct himself, > so we didn't worry about it - he says it fine, now). Big party. > Middle of preschool. Kindergarten came and went with him learning > tons, reading well and being generally happy. Now 1st grade has > come and gone, with him at the top end of his class (where a full > 75% of the kids in-district test out as gifted). He's now in the > other room working transformers to their full extent. > > So, for those of you just beginning this journey with a 2 year old > and wondering what the future will hold, remember that this can > often be overcome with lots of therapy and lots of love. It's a zen > thing, but if you hold in your head that your child WILL talk, then > getting there is just a matter of finding the path instead of adding > in the detour of " IF " - that's just a waste of time - especially at > 2. > > I'm going to transform Omega Supreme now and I'm sure at some point > I'll have to ask him to be quiet. What a nice present for me! > > Marina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Thanks for the encouraging words. They are so wonderful to hear. Happy Birthday to your son! _____ From: [mailto: ] On Behalf Of marina3029 Sent: Sunday, July 16, 2006 3:27 PM Subject: [ ] A milestone... As some of you older timers know, my apraxic son turned 8 today. It has come without angst, without issue - and I want to pass that onto today's newbies. At 2, my son had no words - he said " da " for everything, and it was hard to get that out of him. He was clearly VERY strong, but couldn't quite figure out how to crawl right, and stood and ran at 11 mos instead. He also couldn't figure out how to roll himself over, but did so by accident fairly frequently. No one was really concerned because he was so clearly healthy - a whopping 24# at 4 mos. and off the charts huge on every scale there was. No failure to thrive, here. You know how most babies lose weight when their breast fed? Not mine... So, no one was really concerned - he was healthy, happy, and doing MOST things on time. Then, when I realized that he was, in fact, pretty different from other 2 year olds, I took him into my doc who said he wasn't really worried, but to get an eval if I wanted. I did, and got one of the world's worst therapists. We just kept telling ourselves that it might not be helping him, but it wasn't hurting him... Then the therapist basically told me that he was apraxic AND dumb - potentially retarded and that I was a deluded mother. How could I POSSIBLY think he knew his letters and colors at 2?!?? Got a new therapist who rocked (NEVER NEVER NEVER NEVER question getting a new therapist - if you don't think yours is working, GET A NEW ONE!). She worked with him very well and, even when he was tired, she gave him the right amount of praise and kept him working. Geez! We spent MONTHS on S,F and Th. At 5.5 he was discharged from ST - kind of a surprise for me as his pronunciation wasn't perfect, but it was, in fact, perfectly age appropriate (he still struggled with Th, but could correct himself, so we didn't worry about it - he says it fine, now). Big party. Middle of preschool. Kindergarten came and went with him learning tons, reading well and being generally happy. Now 1st grade has come and gone, with him at the top end of his class (where a full 75% of the kids in-district test out as gifted). He's now in the other room working transformers to their full extent. So, for those of you just beginning this journey with a 2 year old and wondering what the future will hold, remember that this can often be overcome with lots of therapy and lots of love. It's a zen thing, but if you hold in your head that your child WILL talk, then getting there is just a matter of finding the path instead of adding in the detour of " IF " - that's just a waste of time - especially at 2. I'm going to transform Omega Supreme now and I'm sure at some point I'll have to ask him to be quiet. What a nice present for me! Marina -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.10.1/389 - Release Date: 7/14/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.10.1/389 - Release Date: 7/14/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Thank you so much for your wonderful post. (Max's Mom in CA) > > As some of you older timers know, my apraxic son turned 8 today. It > has come without angst, without issue - and I want to pass that onto > today's newbies. > > At 2, my son had no words - he said " da " for everything, and it was > hard to get that out of him. He was clearly VERY strong, but > couldn't quite figure out how to crawl right, and stood and ran at > 11 mos instead. He also couldn't figure out how to roll himself > over, but did so by accident fairly frequently. No one was really > concerned because he was so clearly healthy - a whopping 24# at 4 > mos. and off the charts huge on every scale there was. No failure > to thrive, here. You know how most babies lose weight when their > breast fed? Not mine... So, no one was really concerned - he was > healthy, happy, and doing MOST things on time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Thank you, Marina, for that wonderful story. It gives the rest of us hope. Warm regards, ****************** (Rochester, NY) Mom to , 3.1 years, Verbal Apraxia & , 11 months ________________________________ From: [mailto: ] On Behalf Of marina3029 Sent: Sunday, July 16, 2006 3:27 PM Subject: [ ] A milestone... As some of you older timers know, my apraxic son turned 8 today. It has come without angst, without issue - and I want to pass that onto today's newbies. At 2, my son had no words - he said " da " for everything, and it was hard to get that out of him. He was clearly VERY strong, but couldn't quite figure out how to crawl right, and stood and ran at 11 mos instead. He also couldn't figure out how to roll himself over, but did so by accident fairly frequently. No one was really concerned because he was so clearly healthy - a whopping 24# at 4 mos. and off the charts huge on every scale there was. No failure to thrive, here. You know how most babies lose weight when their breast fed? Not mine... So, no one was really concerned - he was healthy, happy, and doing MOST things on time. Then, when I realized that he was, in fact, pretty different from other 2 year olds, I took him into my doc who said he wasn't really worried, but to get an eval if I wanted. I did, and got one of the world's worst therapists. We just kept telling ourselves that it might not be helping him, but it wasn't hurting him... Then the therapist basically told me that he was apraxic AND dumb - potentially retarded and that I was a deluded mother. How could I POSSIBLY think he knew his letters and colors at 2?!?? Got a new therapist who rocked (NEVER NEVER NEVER NEVER question getting a new therapist - if you don't think yours is working, GET A NEW ONE!). She worked with him very well and, even when he was tired, she gave him the right amount of praise and kept him working. Geez! We spent MONTHS on S,F and Th. At 5.5 he was discharged from ST - kind of a surprise for me as his pronunciation wasn't perfect, but it was, in fact, perfectly age appropriate (he still struggled with Th, but could correct himself, so we didn't worry about it - he says it fine, now). Big party. Middle of preschool. Kindergarten came and went with him learning tons, reading well and being generally happy. Now 1st grade has come and gone, with him at the top end of his class (where a full 75% of the kids in-district test out as gifted). He's now in the other room working transformers to their full extent. So, for those of you just beginning this journey with a 2 year old and wondering what the future will hold, remember that this can often be overcome with lots of therapy and lots of love. It's a zen thing, but if you hold in your head that your child WILL talk, then getting there is just a matter of finding the path instead of adding in the detour of " IF " - that's just a waste of time - especially at 2. I'm going to transform Omega Supreme now and I'm sure at some point I'll have to ask him to be quiet. What a nice present for me! Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 What a fantastic post! It gives me renewed hope for our son. He is now 4 and a half. While he's come a long way, there is still quite a journey ahead. Thanks for being generous enough to share this with us. Best, Pam O'Connor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Congratulations on such a happy post...and speaking of happy... Happy 8th Birthday to Zachariah!!! http://www.ilovewavs.com/Holidays/Bday/Bday23.wav As a newbie here you explored both alternative and traditional therapies...and today we know the results of all your hard work! Success! Now that you're on the other side -thought today of all days you'd enjoy this trip down memory lane with a sample of messages from you and starting from your first message here! Wed May 1, 2002 2:41 pm " marina3029 " <philipmary@... Hello all - glad to have found you! I am mom to 2 sons - Zachariah will be 4 in July and has been diagnosed with apraxia of speech, Riley is 2.5 and only has about 15 words (but lots of phonemes!?!). Zach was diagnosed officially about 1 year ago, but I knew before we took him in for the evaluation what it was from lots of research. He's very classically verbally apraxic - no babbling, " Da " for everything, etc.. He now has made FABULOUS progress (thanks to his new SLP) and speaks in sentences. He still flips consonants around, but if he could get a handle on S,L,F & Z he'd be 90% intelligible. I'm really proud of him. My younger son has not been evaluated yet. He wouldn't cooperate and, after discussing it with my ped (who's great), we decided to hold off. He's been adding lots of words the past 2 weeks and been generally more responsive. So - here are my questions. I'm sure you've heard them a million times... I want to order the ProEFA from Nordic Naturals but am unclear which one I should be getting - is it liquid form or a chewable? What's the dosage info (Z is over 40# and Riley's over 33#)? How many of you have been to see Developmental Pediatricians? After a long talk with my ped, he referred me to a developmental ped (at our local Children's Hospital - where our SLP is) for an evaluation. I was wondering if any of you wanted to share your experiences so I could better understand what to expect...My husband (and both our families) think I'm going a bit overboard since he IS talking now...You understand, I'm sure...If I hear - " He'll talk when he's ready " I'm going to scream! Thanks for any and all input! Marina Tue May 7, 2002 8:33 am " marina3029 " philipmary@... Been on ProEFA for 4 days now... and could I be wrong that I already see changes? On the second day, my son said - pretty clearly, too - " I want to put my pants on. But not these pants, my car pants. Please, daddy? " While it's not unusual for him to request pants, or to string together quite so many words, it was the content and method that was unusual. He normally would have just yelled " NO!! " upon seeing the " wrong " pants and whined when we told him no. Instead he asked for them. He also said " animal " clear as day last night and has been able to say the word " smell " with only a slight skip bw the s and the m - something we've been working on for 3 weeks to no avail. That's not the only incidence of this over the past few days. Even my pragmatic, disbelieving husband has noticed it. Could it be this fast?? Also, we're not telling the SLP he's taking it. Not only do I think she'd frown on it (or think we had signed up for snake oil), but I'd like an unadulterated opinion of his progress. While I really like her, and she's wonderful with Zach, I don't feel that she's entirely " with " us - she's still part of the hospital and will always follow protocol, etc.. There's a degree of separation. On the contrary, I feel like our pediatrician is much more an advocate for the child, bringing his medical knowledge to the table without any of the other " doctors know more than you don't question us " attitude. I know so many people who've had a terrible time getting a referral to a developmental ped - all I had to do was ask about the OT my SLP had suggested and his reply was to go to a Dev Ped and work our way down from there... Sorry so long - just wondering if anyone has any thoughts - Marina Wed May 8, 2002 7:47 am " marina3029 " philipmary@... After less than a week on ProEFA, my son said " Farm " this morning perfectly. He said it in his usual way first " warm " and I corrected him, and he copied perfectly - twice!!!! He'll have 2 capsules today... Additionally, he seems to be more aware of his world - kind of funny to say, but I don't know how else to put it. I crabbed at him this morning for trying to wake his little brother up too early (he's sick) and he went downstairs and told daddy that " Mommy's mad to me. " He's never ever ever done that! Just wanted to share! Marina Thu May 9, 2002 8:08 am " marina3029 " philipmary@... Betsy - I can only tell you my experience - I've learned from reading and listening that apraxia affects children at different levels. I'm one of the lucky ones in that Zach actually talks and has since he was 2.5 or so. When he was 2.5 tho, he had about 10 words - most of which were approximations or like " moo " for cow or " bo " for bread. On the other hand, he would say " bo " for bread to eat and to hear " shornin' bread " a song he loved. I knew he had some complex thoughts, like your son. He got frustrated alot and would yell. I started offering him choices by pointing to one hand or the other and letting him 'answer' that way. I felt like there was a wall to get over or though or around... I know that the common belief is not to discuss the child's speech issue with them when they're young, but I did. I told him (because I knew he could understand) that he would be able to talk soon. To tell me what he wanted. Where he wanted to go. He just sort of looked at me, thinking about it. I told him he was going to be big soon, drive a car, ride a bike, talk, read books by himself.... I can't say it was a magic charm, but it was the difference bw not trying and trying. He used to look at me when I asked him to repeat something like, " you idiot. I don't talk, remember? " All the sudden he started trying - talking a bit, adding words. Therapy (with a good therapist) refined things but Z took the initiative. So, I don't know what to say about maintaining a clear level of hope without over pressuring yourself and your son. There is hope. As you know, I've just started Zach on the ProEFA - it's made a difference. Whether or not it's a wonderpill remains to be seen. Maybe it would be helpful if you went to a group meeting and could talk to other parents and see other kids. I've never been (it would be hard for me to do) but I think it might create a broader picture for you. One last story that I keep in my head. I used to sing " twinkle twinkle " to Z when he was little - less than 2 - and end it with " mommy loves you just the way you are " . I hadn't sung it to him in months - MONTHS - and we were playing tent in my bed. I started to sing it and he was finishing the lines for me. When we got to the end of the song, he finished it with my words. I cried. It was one of those poignant moments that only come along a few times in your life. I realized that he HAD been listening even when he looked at me and didn't respond. Even when he didn't even look at me. I feel sure there is a moment like this for you. Hope this helped. Email me when you need to talk! Marina Tue Jun 11, 2002 11:56 am " marina3029 " philipmary@...' Re: Last year - but still of interest/SLI overlaps? Funny you just wrote about this, because I was just thinking about the delay, then accelerated (but seemingly " normal " ) development of language in both my sons - one with and one without ProEFA. Older son: no expressive language except " da " until 28 mos (or so). Complicated gestures and other ways of communicating. All the sudden then, he had a burst of vocabulary additions. He babbled more, added single words (and word approximations which we understood). After a couple of months of this, he began putting words together. All of this happened without ProEFA, special diets, OR speech therapy (we were on a waiting list). Second son: virtually no expressive language except for Ma, Da, and Zaaat (approximation of older brother's name). Started him on the ProEFA about a month ago and saw the same spurt. He now says up, out, hat, ap (apple), stick, steak, eat, bye, dog, cow, moo, kitty, ham, ball, hug, and more... On the ProEFA, my older son is more descriptive - his conversations have more depth and are less repetitive (he doesn't stay with just the safe phrases he already can say well). My younger son has started words and pays better attention. They're two very different kids - my older son had " classic apraxia " - had no phonemes beyond " Da " at all. Younger son has added a variety and babbles differenty ones, including Ls, Vs and Fs - which older son still can't do. Back to your original question, do I think the ProEFA has something to do with the spurt of language in my younger son? yes. Do I believe that having this spurt in those OH SO SPECIAL formative years of <36mos? yes. I also believe (and people may jump down my throat here, too) that even tho the symptoms in my 2 sons presented themselves nearly exactly the same, that the organics of their situations stem from 2 different issues. I believe there are many causes for apraxia - and that, eventually when we know more, the label of apraxia will go away and we will have diagnoses based on root-causes - what ever they may be! FYI - my older son has a vocabulary too big to enumerate. He still has issues with certain phonemes, but is largely understandable. His latest word is " economical " (from a book) and " Stegosaurus " - he says them both PERFECTLY and did the first time they came out of his mouth. He's not quite up to age level for intelligibility, but he's getting there! I don't believe he's " cured " but I don't believe in my heart he will need therapy at 9 (if he does, he does, but the pace seems better than that). I don't know if this makes sense to you - or if it's too rambling (I do have the flu) but I'd welcome an intelligent conversation about it - especially about the label of apraxia. Thanks for your insightful questions - I'd be curious to hear what you and others think... Marina Fri Jun 21, 2002 7:34 am philipmary@... Lynn... Just wanted to tell you that while my sons haven't lost words, we've DEFINITELY seen a plateau. My 4 year old made great progress but has been in a plateau for about 2 weeks now. My 2 year old is still babbling, but not adding any new words. Also, my older son was on 2 ProEFAs a day for about a week and I finally realized that he was being excessively naughty because of it. It increased bad behaviour (kicking, hitting, etc) and made tantrums REALLY bad. Dropped him to 1 and he was fine, but that's also when the plateau started. I've also been reading about B vitamins. Do you use any other supplements? Apparently, kids that are given ALOT (like 5000%) of the dv of thiamin (B1) excelled - even kids without issues... I'm going to start giving my 2 extra supplements. Zach (my 4 year old) eats really well - loves veggies, fruit, meat, everything (except most dairy, which is understandable as we're middle eastern). My younger son has a fairly limited diet - no veggies (except raw carrots) and no fruit except apple and watermelon and even that's hit or miss... I actually cried at dinner last night because he was dipping his chicken in barbecue sauce instead of screaming because I put something unrecognizeable on his plate. Anyway, I found a site that has a pretty great explanation of supplements and dosages. The cost doesn't seem prohibitive, but I'm still researching the company. Let me know if you're interested. Otherwise, please don't beat yourself up. I know that I wake up nights wondering why I got 2 kids with speech issues - then I see them screaming and running around in the pool and I have to remind myself that I shouldn't care... It's hard, but I also found that when I didn't smile, my kids didn't either. Best to you - Marina Mon Jun 24, 2002 8:09 am " marina3029 " <philipmary@... Is it REALLY apraxia?? looking for advice Ok - I was the one who found apraxia as a diagnosis for my son long before we went into a SLP. Two different SLPs confirmed my belief over the past year. But now I'm questioning it... A little (brief as possible) background: no speech but " da " until he was 2, but his receptive language was fine - above average. At 2.5 he just started adding words (a leap) and swept right into sentences. His progress has been speedy since then - he now holds conversations, is intelligible by strangers about 65% of the time, with family and friends it's about 90%. He still has problems with S, L, F, Z (and his name is Zach) and V solely at the beginning of words and TH everytime (he replaces it with a D sound - like he's from Brooklyn - Da Bridge - lol!). Blends are hit or miss. He is so intelligible because he replaces them with the same sound EVERY time. Little is " wittle " and love is " wuv " . Saw is " yaw " and sorry is " yorry " . He can make the sounds - usually - in isolation, but his replacement seems more habitual than anything. I also haven't seen the same frustration I keep hearing about in other kids - nor is there any shyness about talking (generaly shyness, yes - but not language specific - and both his parents were REALLY shy as kids ). He's definitely got some sensory issues - most of which he seems to be outgrowing. Transitions used to be terrible - screaming battles if he didn't want to leave, etc. Now, unless he's incredibly tired, they're easy! (Thank GOD!!) Some food textures he doesn't like (like rice and noodles) but he's fine with everything from pickles to tomatoes to squash to meat etc. so it doesn't seem to be too limiting. He also likes alot of sensory input - he jumps, runs, screams with delight, hangs upside down, etc.. But he can sit quietly and with some time outside each day he's fine. He seems to be indistinguishable from just being a regular 4 year old boy now. I also noticed that while he had a hard time eating an apple the " big boy " way, his brother had no problem tho he was 14 mos younger. And he seemed to have a hard time biting entirely through a piece of pizza. I mentioned it to his ST and she brought in a feeding specialist/ST who also thought he had some low tone in his mouth and that he seemed to favor one side. His ST has been working on it with him for a few minutes each day and we work at home. We've already noticed a difference... If you ask him to make all sorts of faces, roll his tongue, etc. he can do all of it. His cadence is fine and he has great intonation - asks questions with a lilt and can sing with a tune... This just doesn't sound like apraxia anymore to me... My husband's family has a long history (back 2 generations) of speech problems. One uncle of my husband's didn't speak until he was 6. They just sent him to school (in Germany) and one day he asked someone to pass the ketchup or something. He's in his 70s now, but is a well respected electrical engineer who speaks 3 (!) languages. My FIL stuttered (and also had an aversion to noodles and rice which he can remember). My brother-in-law spoke very late. His son had ST for 5 years and still sounds like he has a bit of a drawl or something. I asked what his diagnosis was and they never got one. Our other son is 2.5 and is also just beginning to talk. His receptive language is not as clearly fine as his brother's, but he's doing ok. (that's another story) Anyway...Does anyone have any input? Whatever the therapist is doing is working - that's not the reason. I just wonder if his issue is more a muscle tone thing combined with some sensory issues... Looking for input - and sorry not brief at all!! Marina " marina3029 <philipmary@...> " Tue Jan 28, 2003 8:40 am Hello - Looking for some advice - My 4.5 year old son has boundary problems - at least that's what I call them. This morning I sent him downstairs while I got his little brother up. I came downstairs and found him standing on the TV stand playing with the antenna for the TV - thank GOD it's sturdy! He's been stealing my TABs (for those young ones out there, it's like Diet Coke) from tables and hiding them or sneaking away and drinking them. Then he did it with my husband's selzer the other day - he asked for some at dinner. We said he had to eat a bit more of his food and then we'd give him some and, when we went to get the 3rd round of clean untensils from the kitchen, he was swilling it out of my husband's cup! He's been getting into his little brother's crib, going into our 3rd floor guest suite (off limits) and generally being a PAIN! They all seem to be boundary issues to me - they've been made PERFECTLY clear to him. The TAB is mine, the german selzer is Daddy's, the crib is his brother's, the 3rd floor is off limits and he cannot play in the kitchen (that's another story). He continues to do THE SAME THINGS. He's not seeking negative attention because he's TRULY trying to hide what he's doing. I'm beside myself because I hate being the witch I become when all I do is chase and yell... Any suggestions?? I think one of my problems is that he's VERY self- sufficient. When he was non-verbal, if he wanted something, he would go get it. He taught himself to talk, etc.. Now, I guess, in a way we're curbing his independence by not letting him do exactly what he wants... Any opinions would be welcome. I know this is normal kid stuff, but I feel like I'm beating my head against a wall here. Thanks - Marina Sat Feb 7, 2004 9:58 am philipmary@... Re: Difference in Apraxia rates? What a terrific question regarding the rates in Japan vs. the US. I'm not certain where you could go to find an appropriate answer. In terms of your question regarding interactions with medications etc., this is why I believe in moving forward after having spoken with a doctor and/or pharmacist (sometimes pharmacists know more about interactions than the docs do!). I spoke about this with my pediatrician - and his only concern was digestive upset. He also said that if we were trying to regulate a condition - epilepsy, say - he would want us to stop ALL supplements, vitamins, allergy meds, etc.. This rang a bell as when my roommate in college was combatting epilepsy, she was asked to stop taking her allergy meds and the pill. You don't state if you are a doc or not, but I would recommend seeing one for a discussion about this. As for the placebo effect, it could very well be. I knew how much I wanted it to " work " for my children, and that's why I didn't tell anyone outside my house that we were using it. Not the ST, not the neighbors, babysitters, etc.. Unilaterally, they all commented on how much more my older son was speaking (he had been non-verbal until 2.5/2.8). My children DO NOT follow the pattern states here in that neither regresses when we stop the efas. We stopped my older son for over a year - in that time, he made such fabulous progress that he was discharged from ST. In fact, as the efas began to cause behavioral issues, taking him off them proved beneficial. My younger son (not apraxic) has been on the efas for over a year and we had seen no benefits. Because his diet is so limited (excessive SID), we kept him on it. My husband upped him to 2 a day without telling me or anyone else. All the sudden, he began to speak much more - voluntarily using words, etc.. I was speaking to my husband about how much better he was - and thank god for his therapist (who we LOVE but had only been seeing for a month or so) - and he told me. We stopped taking it altogether for 2 weeks (we all had the flu, ran out and were negligent about reordering). No regression. I don't know what to say about the reasons why - but I do believe that the efas acted as an aid in their progression through ST. FYI - we put my older son back on the efas, and it no longer creates the behavioral problems it used to (and yes, we know from many trials that it was the efas). In fact, it seems to help him regulate himself a bit now - he's going through the terrible 5s. Your post makes it unclear if you are asking to see if you should give it to your child or if you should recommend it to patients. My suggestion to either is to consult with a doctor and then proceed in the most scientific way possible. Document how many words a child has before starting, how many after 1 day, 2 days, etc.. Behavioral differences, mood changes, articulation differences - AS WELL AS other dietary and environmental changes which might affect the results, too. Don't tell others what you are doing - see what they have to say. If you are in a position to offer a blind study of your own (giving efas to one group and vitamin e - or something similar - to others), that would be VERY interesting. I'd love to see what you think. Finally, I applaud you for questioning it. I, too, didn't really believe the anecdotal results. It was when I heard of trials being done for other brain-related diseases (depression, Parkinsons, etc.) that it reoccurred to me to try. At that point, I spoke with my doctor about the potential for benefits and his response (beyond what I wrote above) was to be careful of allergies (since my youngest is deathly allergic to peanuts and, now, shrimp). He also said that he was taking it because he had heart-disease in his family. " Can't hurt " was his response IN OUR CASE. While he's a definite skeptic and doesn't see either child enough to be convinced one way or the other about it's efficacy, he's a wonderful partner on this path. Hope this response helps - Marina Sat Mar 20, 2004 7:52 am philipmary@... For Carolyn... Hi - Ah, yes, the wrestling matches with a poor child who doesn't understand. Rots, doesn't it? My younger son has receptive issues - and lots and lots of sensory issues. He's about 41# now (and I'm about 125) and there are lots of things I cannot do alone with him anymore. Like go to the doctor when he's sick...he's good for the ear checking, etc., but NOT for the throat check (and who likes that anyway?). Last time the doc looked at me while we were holding him trying to pry open his mouth and said, " Geez. You grow 'em big AND strong! " Then he snapped a tongue depressor in his mouth. Very very NOT fun! Ok, so you know that I feel your pain, I do have a couple of other suggestions. Will your child eat garlicky things? Garlic will mask the flavor of LOTS of things. Will she eat garlic bread, for instance? You could put quite a bit on a piece of garlic bread. You can also hide it in spaghetti sauce. I got away with putting a few drops on a vanilla wafer and making it cookie #2 when my son was really hungry. First one goes in fast, second one even faster. It takes a while for the oil to soak into the cookie, though. From a taste standpoint, the stronger, more pungent the flavor, the better at masking the fish-flavor it's going to be. This includes lemon, garlic, tomato, onion, pickle, etc.. Have you tried mild salsa? Lots of kids here like salsa - I think it's because it " wakes " up their mouths - again, a sensory thing. If none of these posts give you a good idea, why don't you post some of her favorite foods and we'll see what we can come up with! Oh! One other quick note - though you know your child better than anyone - it took me a while to figure out how to communicate with my son, but now I can show him the ice cream and say, " Do you want this? " He gets very excited, then I say, " Then eat this. " If you do it often and consistently - and don't back down - it works. And my son has the will of...I don't even KNOW what! Start small - if you want dessert, you must eat X. Though they may not understand the words, if you gesture it enough, they get it. Only you know if this is possible with your child. Good luck! Marina Thu Feb 10, 2005 10:17 am philipmary@... Reading & apraxic kids Hi - I got such an overwhelming private response to my posting about teaching kids to read that I thought I'd respond to them all here - hope that's ok. First, if you're planning to teach your child to read yourself (which isn't for everyone, I have to say - it's frustrating and can create a problem between parent & child) you should first search out any prior diagnoses of LD or other problems which would inhibit the " normal " progression of learning - lack of phoneme awareness, dyslexia, etc.. If you have no diagnoses and your child is severely lacking in reading, you could request it through your school or privately. (I generally prefer the latter, but it can be expensive and it can fall under " mental health " - a different type of insurance for many of us.) Second, review the methods which your child was taught, what s/he absorbed and from what. While I was taught " just phonics " , most kids now are taught myriad methods all at once. Is this good? I don't know - I think it can be confusing for a child who is supposed to be learning to " decode " words using rules to " just memorize " a few words by sight and to guess at meanings based on pictures, sentence structure, story line, etc. (whole language) BUT some kids need various methods to learn. The best way to assess what your child has absorbed is to read with him/her - and not something familiar, either. Check their spelling - have them write a story or letter. You'll get the picture. You can also review old school records or speak to prior teachers. A word of caution here: many teachers are (ahem) arrogant about hoarding the ability to teach and believing that all information should be imparted to students through school and not home. Therefore, I would approach any school official (teachers included) by saying " we're investigating hiring a tutor " or " we're collecting information for LD testing " NOT " I'm going to teach him to read myself since you fools couldn't do it. " Third, think about what your child likes: computers, sports, etc. Find something which would MOTIVATE them to read - a menu, sports section, booking tickets online, etc.. Use that and return to it frequently when working with a child. Fourth, decide which methodology you're going to use - phonics, etc.. Then you need to see if they have the fundamentals for the system - phoneme awareness (picking a word apart into its sounds). If not, you need to build upon that. Fifth, find resources which support your method - computer based, hard copy, and other forms of media to assist you. One of my sons knew all the sounds the letters made, but we couldn't get it across to him that sometimes E says long e, short e, blah blah blah. The Leapster did that for him in a way that I couldn't. Sixth, be consistent and involve your child in the decision TO do this as well as HOW you're going to do it. Just like anything else, it takes practice. If they're not vested and you're forcing this on them, they aren't going to like it. Seventh, be consistent. Not kidding. If you start it, don't quit on them - even if it's hard because you'll be teaching them exactly HOW important it is that they learn to read. Seriously. Eighth, if all this sounds too hard, find a great tutor. Ask for references from LD/older kids who learned to read under them. Ask what methods they use. Ask about certifications. Ask why they're not teaching in a school. Ask about SUCCESSES! Ask about $$, hours, homework, etc.. Ask if they're willing to speak with the child's teachers. You don't get to pick your kid's teachers, but you DO get to pick their tutors. Marina ~~~~~~~~~~~~~~end of archive clips! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Thank you so much Marina! That was a wonderful story to hear and much needed. As a mom of 2 1/2 year old I have been confident that it's not a matter of IF, but WHEN. :>) [ ] A milestone... As some of you older timers know, my apraxic son turned 8 today. It has come without angst, without issue - and I want to pass that onto today's newbies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 My son has done very well so far with speech but at 4.6 years the th sound is nonexsistent. He lacks the control for tongue elevation to produce it.. He replaces the th sound with an f sound. ex. he says baf for bath and thank you is " ankyou " . He does not have the ability to say " the " at all. It is my hope in the not too distant future that our Braydon will be able to communicate effectively so that he is understood all of the time. He has done well with only 6 months of speech and I have no doubt he will continue to gain more understandable speech and language as time goes on. I do get very frustrated though when so-called professionals label a lot of our kids as Globally delayed when it seems that that is not the case at all. The psychologist who labelled our son Globally delayed hoped I would prove her wrong. So far I have. He has learned certain skills and pre kindergarten skills at a very fast rate indeed and he continues to show how quickly he latches on to new vocabulary on a daily basis. I am positive that Braydon will have all the skills necessary to enter kindergarten in the Fall of 2007and then some. He is a curious and inqusitive child who is a sponge for knowledge and new skills. You sound like a very proud Mom and so you should be. I totally agree with your idea of when not if in regards to what the future holds for our children. There is no time for what if's there is time for when. marina3029 <philipmary@...> wrote: As some of you older timers know, my apraxic son turned 8 today. It has come without angst, without issue - and I want to pass that onto today's newbies. At 2, my son had no words - he said " da " for everything, and it was hard to get that out of him. He was clearly VERY strong, but couldn't quite figure out how to crawl right, and stood and ran at 11 mos instead. He also couldn't figure out how to roll himself over, but did so by accident fairly frequently. No one was really concerned because he was so clearly healthy - a whopping 24# at 4 mos. and off the charts huge on every scale there was. No failure to thrive, here. You know how most babies lose weight when their breast fed? Not mine... So, no one was really concerned - he was healthy, happy, and doing MOST things on time. Then, when I realized that he was, in fact, pretty different from other 2 year olds, I took him into my doc who said he wasn't really worried, but to get an eval if I wanted. I did, and got one of the world's worst therapists. We just kept telling ourselves that it might not be helping him, but it wasn't hurting him... Then the therapist basically told me that he was apraxic AND dumb - potentially retarded and that I was a deluded mother. How could I POSSIBLY think he knew his letters and colors at 2?!?? Got a new therapist who rocked (NEVER NEVER NEVER NEVER question getting a new therapist - if you don't think yours is working, GET A NEW ONE!). She worked with him very well and, even when he was tired, she gave him the right amount of praise and kept him working. Geez! We spent MONTHS on S,F and Th. At 5.5 he was discharged from ST - kind of a surprise for me as his pronunciation wasn't perfect, but it was, in fact, perfectly age appropriate (he still struggled with Th, but could correct himself, so we didn't worry about it - he says it fine, now). Big party. Middle of preschool. Kindergarten came and went with him learning tons, reading well and being generally happy. Now 1st grade has come and gone, with him at the top end of his class (where a full 75% of the kids in-district test out as gifted). He's now in the other room working transformers to their full extent. So, for those of you just beginning this journey with a 2 year old and wondering what the future will hold, remember that this can often be overcome with lots of therapy and lots of love. It's a zen thing, but if you hold in your head that your child WILL talk, then getting there is just a matter of finding the path instead of adding in the detour of " IF " - that's just a waste of time - especially at 2. I'm going to transform Omega Supreme now and I'm sure at some point I'll have to ask him to be quiet. What a nice present for me! Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Hi - boy, that TH sound is HARD! my son didn't do it until he was about 5 if that helps - and he did the exact same replacement. One word of advice while you're working on it - be sure that he knows when it's REALLY an F and when it's a TH. That phoneme awareness will help him immensely when he's learning to read and spell. Man, one thing ST is great for is phoneme awareness! All my son's teachers have told me how great he is at sounding words out. With only 6 mos of therapy it sounds like he's done great - best of luck to you! M As some of you older timers know, my apraxic son turned 8 today. It > has come without angst, without issue - and I want to pass that onto > today's newbies. > > At 2, my son had no words - he said " da " for everything, and it was > hard to get that out of him. He was clearly VERY strong, but > couldn't quite figure out how to crawl right, and stood and ran at > 11 mos instead. He also couldn't figure out how to roll himself > over, but did so by accident fairly frequently. No one was really > concerned because he was so clearly healthy - a whopping 24# at 4 > mos. and off the charts huge on every scale there was. No failure > to thrive, here. You know how most babies lose weight when their > breast fed? Not mine... So, no one was really concerned - he was > healthy, happy, and doing MOST things on time. > > Then, when I realized that he was, in fact, pretty different from > other 2 year olds, I took him into my doc who said he wasn't really > worried, but to get an eval if I wanted. I did, and got one of the > world's worst therapists. We just kept telling ourselves that it > might not be helping him, but it wasn't hurting him... Then the > therapist basically told me that he was apraxic AND dumb - > potentially retarded and that I was a deluded mother. How could I > POSSIBLY think he knew his letters and colors at 2?!?? > > Got a new therapist who rocked (NEVER NEVER NEVER NEVER question > getting a new therapist - if you don't think yours is working, GET A > NEW ONE!). She worked with him very well and, even when he was > tired, she gave him the right amount of praise and kept him > working. Geez! We spent MONTHS on S,F and Th. > > At 5.5 he was discharged from ST - kind of a surprise for me as his > pronunciation wasn't perfect, but it was, in fact, perfectly age > appropriate (he still struggled with Th, but could correct himself, > so we didn't worry about it - he says it fine, now). Big party. > Middle of preschool. Kindergarten came and went with him learning > tons, reading well and being generally happy. Now 1st grade has > come and gone, with him at the top end of his class (where a full > 75% of the kids in-district test out as gifted). He's now in the > other room working transformers to their full extent. > > So, for those of you just beginning this journey with a 2 year old > and wondering what the future will hold, remember that this can > often be overcome with lots of therapy and lots of love. It's a zen > thing, but if you hold in your head that your child WILL talk, then > getting there is just a matter of finding the path instead of adding > in the detour of " IF " - that's just a waste of time - especially at > 2. > > I'm going to transform Omega Supreme now and I'm sure at some point > I'll have to ask him to be quiet. What a nice present for me! > > Marina > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Our daughter has also been termed having a global delay and is hypotonic..... This may be a dumb question but can this mean that her fine, gross, and cognitive skills be lacking because of her delay in speech? And what are others definitions of " global delays " ?? I understand the gross and fine skills being delayed as it realtes to the but do they impact cognitive as well? It does seem like since her speech has picked up her thought processes are exploding.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 The exploding thought process is often there all along...just hard to show it off when you can't communicate. Many of these children are diagnosed incorrectly with cognative delays because of the severe expressive speech delay. (We were told ph had moderate cognative delay at 17 months - now I have to fight for services...since he's doing so well. No one would say that now. Certainly there are kids out there with global delays - but the importance of getting the " right " diagnosis is gearing therapy appropriately to the problem. We had a child specialist coming to the house for months dealing with cognative delays that didn't exist. Would have been nice to just have an extra weekly speech session for apraxia! - [ ] Re: A milestone... Our daughter has also been termed having a global delay and is hypotonic..... This may be a dumb question but can this mean that her fine, gross, and cognitive skills be lacking because of her delay in speech? And what are others definitions of " global delays " ?? I understand the gross and fine skills being delayed as it realtes to the but do they impact cognitive as well? It does seem like since her speech has picked up her thought processes are exploding.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 The answer is " YES! " The term " Global delay " can often be hinting at mental retardation. " Global delay " is used in young children, I believe, because young children often " catch up " developmentally with the right interventions. Apraxic kids are often wrongly labeled as globally delayed or mentally retarded because of their limited expressive speech. was one of those kids. Before we knew she had apraxia, one psychologist told me that she could very well be mentally retarded because of her speech and " flat affect. " She was recently evaluated for transition to preschool services and that psychologist told us that she was very bright and that her intelligence would help to bridge the gap to resolving her apraxia. Oh, what a difference 7 months can make! I find it reprehensible how many apraxic kids have these labels placed upon them. I would take this label with a grain of salt. I hope this helps! Warm regards, ****************** (Rochester, NY) Mom to , 3.1 years, Verbal Apraxia & , 11 months ________________________________ From: [mailto: ] On Behalf Of egt2644 Sent: Monday, July 17, 2006 11:24 PM Subject: [ ] Re: A milestone... Our daughter has also been termed having a global delay and is hypotonic..... This may be a dumb question but can this mean that her fine, gross, and cognitive skills be lacking because of her delay in speech? And what are others definitions of " global delays " ?? I understand the gross and fine skills being delayed as it realtes to the but do they impact cognitive as well? It does seem like since her speech has picked up her thought processes are exploding.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 You didn't mention your daughter's age, but I would like to comment. If your child is under three, it is very difficult for a doctor to diagnose a cognitive delay. The testing that they do is just a tool, and it is dependent on your child's willingness to cooperate with the testing process. Young children are notorious for not participating in the process, as they are far more interested in pursuing their own interests. My son is 28 months old. He had open-heart surgery at 16 months, before which he was only 8kg (his birth weight was 4kg). He didn't walk unitl 22 months. His fine motor is normal, though he still can't use scissors. He can draw lines and circles, however. And he was early at stacking blocks. He had only two sounds, " ma " and " a " at 24 months. At 25 months, he was given a developmental assessment by his speech therapist. Based on the testing instrument which failed to confirm his abilities, the therapist said he was globally delayed. My son knows all the letters of the alphabet, both upper and lower case. He does correspondence counting up to six, and can recognize numerals 1-10. He also can do backwards counting from 20. He is independent on the computer, but still can't keyboard. Rather, he uses the mouse and his knowledge of sight words to get around. I could go on, but the point is that my son is not cognitively delayed and yet the test was given and his scores indicated such. The therapist based her assessment on the test alone, and failed to do any parental interviewing to aid in her assessment. I don't think a kid who knew all his shapes and colors at 14 months and had a receptive language of more than 300 words at 12 months could really be considered cognitively delayed. Do your own assessment of your child's cognitive abilities. Check out the milestones charts at PBS Parents website to see if your child is where she should be. Speech delay can give false negatives on tests. Hypotonia as a soft sign of apraxia can give the false impression of a global delay. Make sure you agree with the assessment before moving on with a treatment protocol. The parent knows best in this area. Quote Link to comment Share on other sites More sharing options...
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