Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Oh My Judi,let us know as soon as you can. Hugs June --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.455 / Virus Database: 255 - Release Date: 2/13/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 good luck judi, my prayers are with you and your much larger (healthy) family shortly. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 My son is 30 months, has been in therapy for over 13 months, and only have 4 word approximations (not actual words). He was officially diagnosed as apraxic by a SLP but the developmental pediatrician refuses to diagnosed because of age and lack of speech sample. I can really empathize with you regarding anxiety. Can you imagine what your child's anxiety level is like?? I've got different therapists telling me different things and my Early Intervention service coordinator denying me services illegally. (She is currently being investigated by the state department of education.) I don't really have any encouraging tips or ideas to share but I have tons of determination that my child WILL talk if I have to go through hundreds of therapists. I will be a good advocate for my child, read all the current information/books to know if a therapist is leading me wrong or is just full of it. I will make the school district provide the services he is entitled to or I will hound them until they wish they never heard my name. If you have that type of determination, I KNOW your child will eventually speak, too. Good luck to you! Joyce Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 To Joyce, and the orginal poster of this topic. My daughter Abby is now 4 1/2 yrs old. She is now speaking in 3-4 word sentences. However she isn't always intelligable. So she still relys heavily on ASL. She can count to 10, say and sign her ABC'S, she knows her colors, shapes, animals, and their sounds. She blew out her 4 birthday candles on her cake. (Granted they were all bunched up together on the cake, and it took her several times, BUT she did it!) Looking back when she was first diagnosed with Apraxia, 2months before her 3rd birthday, Abby had ONE word, " Mama " And that really was used for everything/everyone. Abby also had EI, however she did not have speech therapy in EI. She had Developemental Therapy, because she did not have a medical dx that said why she was delayed in her speech. And EI therapists are not diagnosticians. Even once we had the dx of Apraxia, changing things on paper was a cinch, but getting a knoweledgable SLP in apraxia was a whole other ball game, and within 2 months of the Dx, she was going to age out of the program.. and start the early pre-k progam in the school district. I felt Abby got " jipped " of EI so to speak. As far as the school process with the child study teams. My best advice is " you get more bee's with honey then you do with vinegar. Yes, you need to learn the Federal and State laws regarding special education, you need to know what your child needs. You also need to " brush up " on your savy writing in the letters that you will be writing in regards to request of services for you child. You need to learn how to be assertive, without being overly aggresive. When Abby started school in June 2004, she was received the following: 1)5 days of ST, 20min. 2) 3 days of OT, 30 min 3) 2 days of PT, 30min. She also had a teacher who knew ASL, HOWEVER when she entered the ESY in July. Noone there knew ASL. I requested an aid in ASL be with her daily to shadow her. My reasoning was " what if she is hurt, needs a diaper change, etc.. how are the teachers going to know if Abby is signing, " hurt, or diaper change, etc) Hope this was helpful, and somewhat encouraging. Good luck Dawn in NJ PS.. were still trying to get insurance co to approve ST for her. Looks like we might have through the appeals process. Not looking forward to that! Would rather " fight " the schools, then the ins. co > > My son is 30 months, has been in therapy for over 13 months, and only > have 4 word approximations (not actual words). He was officially > diagnosed as apraxic by a SLP but the developmental pediatrician > refuses to diagnosed because of age and lack of speech sample. > > I can really empathize with you regarding anxiety. Can you imagine > what your child's anxiety level is like?? I've got different > therapists telling me different things and my Early Intervention > service coordinator denying me services illegally. (She is currently > being investigated by the state department of education.) > > I don't really have any encouraging tips or ideas to share but I have > tons of determination that my child WILL talk if I have to go through > hundreds of therapists. I will be a good advocate for my child, read > all the current information/books to know if a therapist is leading > me wrong or is just full of it. I will make the school district > provide the services he is entitled to or I will hound them until > they wish they never heard my name. > > If you have that type of determination, I KNOW your child will > eventually speak, too. Good luck to you! > > Joyce Lindsey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 my daughter got diagnosed with severe verbal dyspraxia at 24 months, along with hypotonia and chronic static encephalopathy. we are frustrated like yourself, but our frustration comes from the lack of progress with speech 4 hrs a week, not much results > > > > My son is 30 months, has been in therapy for over 13 months, and > only > > have 4 word approximations (not actual words). He was officially > > diagnosed as apraxic by a SLP but the developmental pediatrician > > refuses to diagnosed because of age and lack of speech sample. > > > > I can really empathize with you regarding anxiety. Can you imagine > > what your child's anxiety level is like?? I've got different > > therapists telling me different things and my Early Intervention > > service coordinator denying me services illegally. (She is > currently > > being investigated by the state department of education.) > > > > I don't really have any encouraging tips or ideas to share but I > have > > tons of determination that my child WILL talk if I have to go > through > > hundreds of therapists. I will be a good advocate for my child, > read > > all the current information/books to know if a therapist is leading > > me wrong or is just full of it. I will make the school district > > provide the services he is entitled to or I will hound them until > > they wish they never heard my name. > > > > If you have that type of determination, I KNOW your child will > > eventually speak, too. Good luck to you! > > > > Joyce Lindsey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 hi lisa- i just wanted to let you know that i have taken your late talker book to our therapists at childserv which is a very highly regarded clinic here that is sponsored by the united way and has helped us get the therapy josh needs. The book will be reviewed and donated to the parents resource library where it can do the most good,we take our kids there looking for help and answers, josh is going to start a eating class there to try to get him to eat more foods. He is alot happier the last few weeks. we are seeing our psychologist once a week now to work on expressing our feelings without acting out and it is helping. I also loaned my 2nd late talker to another parent with an apraxic daughter. We are having family fun night here thursday from 6-8 and the guest speaker is a slp from the local area education agency. Family fun night is open to anyone with a special needs child from johnston, urbundale, west des moines or clive. I know of 4 families here including myself and i know 3 of the families will be there. Childcare is free and we will have dinner from6-6:45. THE SPEAKER IS FROM 7-8. IF anyone else is interested call me at 5152212971 and i will give you the number to register- thanks- charlotte henry from west des moines in iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 , Thanks for all the information. I live in Bridgewater NJ, so probably not too far from you. We are going to see Dr. Rose Merola in Mountainside on Friday. My son has only started trying to speak words about a month ago. So, I guess considering the late start, he's made lots of progress with his therapy. The SLP (also from Children's Specialized Hospital), said that of the children she's seen who are like Dylan, they end of being Apraxic. I said, " How do you he's not just a late talker? " She said, because Dylan is trying to speak where late talkers won't say much at all. I just had a baby 2.5 months ago, so my anxiety is most likely exacerbated by post partum depression. So, right now, I'm on maternity leave from work. With the pending dx, I'm wondering, can I still maintain my full time job and manage all the appropriate therapies my son will need? We really can't afford for me to quit (living in New Jersey, I'm sure you know what I mean!). I find comfort in reading your stories about Tanner's progress. I refer to it often when I need a boost. I will be getting your book too. Thanks. > > Not sleeping since the diagnosis -I remember those days (and > nights!) I was up online searching and searching because back then > all there was geared to my child was essentially just the sites > apraxia kids and can we talk. > > The descriptions of apraxia I found just 6 years ago didn't fit my > child who was diagnosed with apraxia after 4 -5 months of speech > therapy. You see even after months of therapy Tanner was still > essentially nonverbal outside of the " word " ma and " mmm " at 2 year > 10 month old . But what kills me is that Tanner could have been > diagnosed so much sooner with apraxia which would have given him at > least a year or more of appropriate early intervention in the birth > to 3 years (which are some of the best years for intervention) vs. > just the 5 measly weeks he had. Tanner didn't just have verbal > apraxia, which is hard to impossible to diagnosis as a definitive > diagnosis in a nonverbal 2 YO anyway,(most diagnose as " suspected > apraxia " and begin appropriate therapy just in case) Tanner had at > that point severe oral apraxia -which still affects him a bit to > this day at 9, but very mild now, and also he had hypotonia, and > sensory integration dysfunction, all of which a neuroMD could have > diagnosed sooner. You can have a definitive diagnosis of oral apraxia at > 28 months by the way, or even way younger, and if a child has oral > apraxia it's pretty much a given they will also have verbal > apraxia. Problem is none of the very few websites I visited had any > information at all on oral apraxia, or apraxia's links with > hypotonia, nor did they list the reasons to see a neuroMD, (in fact > back then apraxia kids was pretty negative about MDs diagnosing > apraxia and not there to know if that has changed) I didn't know > to take Tanner to a neuroMD, nobody suggested it, and I was frantic because I wasn't sure > if apraxia even was an appropriate diagnosis of my child. It wasn't > until I started searching the adult neurology sites on oral apraxia > and hypotonia that I started questioning if a neuroMD evaluation > could help. When I first met with neuroMD Dr. Marilyn Agin I didn't > have much faith she could help at all, I was mainly seeing her to > help secure coverage for speech therapy through insurance. ly > I was blown away impressed with how knowledgeable she was and how > much she helped. We all were sad that she hadn't seen Tanner a year > before because as she said " I could have told you then he has oral > apraxia. He doesn't have a clue where his tongue is in his mouth " > PS you know what's ironic? > Mikel who co founded apraxia kids is today one who co founded Speechville with me. > (and we have all the info about oral apraxia, hypotonia, EFAs, > and reasons to see a neuroMD there!) > http://www.speechville.com/ > > As much as one part of me worried and advocated -another part thought > " you watch -he'll fool everyone and just start talking at 3 " > > I cried when I found Bilker's " Talking Page " because when I > heard talking for the first time it sounded like Tanner when > he tried to make any sounds at all. It was the first time I > accepted the reality of apraxia -it's not just " late talkers " . > Listening to at close to 6 years old struggling to > say simple words like " blue " terrified me, but also hit home the > fact that my son Tanner had apraxia. I called everyone to play > 's recording. Thing I didn't know then that I know today > however is that back then, again prior to Tanner being diagnosed, > there really was very little information at all out there. > and Larissa thought was just a late talker, and he didn't > get the diagnosis with apraxia till was 5 years old -so he > missed out on appropriate early intervention. Listen to 's > first talking page when he was 5 years 9 months here > (when he says " red, blue, green " ) > http://www.debtsmart.com/talk/brandon.html > > Like , Tanner also sounded like he was deaf when he first > started talking at 3 (which really kicked in after we started the > EFAs as you will read here under " apraxia " > http://www.drstordy.com/stories.html ) I was told by the > professionals that's because Tanner's tongue was flaccid. You will > find that many apraxic children that don't receive therapy or > appropriate therapy continue to sound monotone/flat. > > But remember Tanner wasn't speaking at all when first diagnosed: > > When tries to say " 1, 2, 3, a, b, c " she sounded just like Tanner at 2 years 10 months > http://www.debtsmart.com/talk/sarah.html > > email to right after I found his site: > > Subject: > > Thanks for the talking kids page! > > Date: > > Wed, 10 Mar 1999 11:03:00 -0500 > > From: > > & Glenn <shop-in-service@e...> > > To: > > pressone@c... > > > > Hi , > > > > Our 2 3/4 year old son Tanner was diagnosed yesterday with apraxia. > > However, as I'm sure you are well aware, we have been dealing with > his > > non speech for much longer. (You may have read my e-mail about > > Tanner.) Tanner looks like a cherub-strangers say that all the > time. > > So we call him " the cherub boy " . > > > > It was wonderful to hear your adorable sons, and the other children > > speak. It really does help. At this point our son sounds the most > like > > when the father says " 1, 2, 3, a, b, c, " . Without much > prompting > > he is non verbal. Also, most of the time, when my husband and I > try > > to ask Tanner questions where he would have to try to answer, my > older > > son, who is four, talks for him. Like your son, Tanner looks and > acts > > normal. Actually outside of expressive speech, Tanner tests on every > > other area above average. This was unfortunately the reason our > > pediatrician was never concerned. We had to push to get his hearing > and > > speech evaluation. > > > > If you could tell us some background on your son it would be > > appreciated. When did he first get diagnosed? How many days of > therapy > > a week does he receive? When did you see the greatest improvement? > > Like Tanner, was there a time he didn't really talk? What is " pure > > apraxia " ? Even though he is a perfect weight now, I have been > > concerned with the way he sometimes shoves large amounts of food in > his > > mouth. Is apraxia a rare condition? I've spent the morning trying > to > > find a local support group where I could receive the answers to some > of > > these questions. Even Tanner's speech therapist said there is not > much > > known about it because it is pretty rare. I did find a world wide > > support group for apraxia in Greenbay Wisconsin called MUMS with 20 > to > > 40 members. > > > > Well again, thanks for putting the talking kids page together. Let > me > > know what you need, and my husband and I can send you a tape and > picture > > of Tanner. > > > > Best, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 You're doing all the right things...let not your heart be troubled. Even if your son is apraxic; it's not the end of the world! It could be worst! You'll just do what you are doing for him; continuing with extensive speech therapy and all will be fine! Keep the faith...stay optimistic. You're son will pick up on your anxiety! Quote Link to comment Share on other sites More sharing options...
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