Guest guest Posted September 21, 2003 Report Share Posted September 21, 2003 hi Lacey, just checked out his latest photos ... sooooo cute! he looks so grown up, is he walking about already?? good luck with the implant Jo ----- Original Message ----- I > posted new photos of Luke and he is so adorable, I REALLY think > everyone should check him out. Its his first set of profesional > photos, and he is just so photogenic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Lacey, COngrats on the upcoming cochlear implant surgery! I'll be thinking of you guys. And the pics are just beautiful. I remember when I had 's first professinal photos...it was a very big even in our house! Barbara, mom to , almost 3 years old > Horrah!! My sweet Lucas is getting a cochlear implant in just 2 1/2 > weeks. Despite a process that seemed like it would go on forever, > we heard today that Luke will have his implant at just 16 months > old!! His heart surgery wont need to be done for some months, so > hopefully by then we will be able to comfort him with our voices. I > posted new photos of Luke and he is so adorable, I REALLY think > everyone should check him out. Its his first set of profesional > photos, and he is just so photogenic! (Okay so he has had a > relapse in his drinking, but today I just dont care!!!) Lacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Rose, thanks for all of the info and advise. I have contacted the House Ear Institute in Los Angeles and the girl on the phone that I spoke with wanted me to wait until about June to start being evaluated, as Whitney will be a year old in July. Her ENT is requesting the CT scan and MRI now and I hope to maybe start the rest of the evaluation sooner than June. I understand that it won't work for everyone, but it seems worth looking into. Thanks again, DeAnn Mom to Austin 8, 5, and CHARgE Whitney 6 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Speaking from the parental point of view, my son has a cochlear implant and it has helped him enormously. He is talking but has problems with articulation. Not all kids have the same types of oral motor problems that my child has. His speech production has been slow and we recently found out that was because he has apraxia of speech which no deaf ed/speech path professional detected until he was five years old??????????? Apparently not all speech pathologists are created equal. Some speech pathologsts are good at auditory discrimination and some are good at speech production. We were going to the wrong type for a long time. There is also another type of speech path (I have yet to find one but it involves also working with the muscles of the face to strengthen speech production - (myo - something speech path). Anyway, he hears very well and comprehension is very good. The implant has been of great benefit to him and us. Each child is different. You will need to seek out a Cochlear Implant Center immediately and have your child evaluated by a pediatric cochlear implant surgeon and the cochlear implant audiology team. Technology is changing so fast, there are very powerful hearing aids available now which may be of similar benefit. You really need expert medical advice in this area. Good luck. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 As a parent, in my most humble of opinions, I would just like to add that if your child is not responding to sound and should be, because they are hearing something, and the child is young, please seek out evaluation by a behavior analyst who specializes in autism. Your child may NOT have autism but due to their MULTI-SENSORY IMPAIRMENTS may have characteristics that are similar to autism. Our official diagnosis is " PDD tendencies " and with that medical diagnois we were able to get ADDITIONAL services in behavior therapy through school and Judevine and my son has improved so much with that specialized behavior therapy that he has very few pdd tendencies anymore. I don't think that would have happened if not for that specific intervention. It has taught him about action-consequence and action- reinforcement. Basically, anything that can JUMP START your child should be utilized at this point. Services are being cut cross the board for children everywhere - try to get everything you can at this point. It's all about behavior therpay and positive behavior support. The intervention does not have to be long - just long enough to teach them to learn to respond. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Rose, I completely agree with you. I have been signing to Whitney sense the beginning. She has amazed us with the ability to sign Mom at 4 months old, and recently has shown that she understands what the sign means. She is always looking at her hands, trying to figure out new signs, but, Mom is her only regular sign. I remember reading on this website, way back, to use any form of communication that works for your child. I have taken that advice to heart, and am very grateful. It melts my heart to see her sign Mom whenever a Dr., Nurse, or Therapist comes near her. Anyway, I really appreciate all of the advise on this site. DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 6 Months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 DeAnn - you are fortunate that you can think about implanting at such a young age. We had to wait till our son was almost 2 years old. He was implanted at 19 months and activated at 20 months. We had no form of communication with our child until then because all the " experts " at the deaf schools told us he would never learn to talk if we used signed language and we believed them. He is five now. If I were you, I would do all my evals now. If all goes well and your child has an auditory nerve that works I would push to have your child implanted for your baby's first birthday. You never know what other problems will come up at the cochlear implant center. Cochlear implant scheduling is cumbersome. There is always a waiting list. There are other ENT emergency's that come up. A member of your implant team may be unavailable for some time due to travel or illness (that happened to us) and so you need to be ready to " GO " as soon as your cleared for the surgery. The sooner your child has access to sound, the better for you and your family. I remember when my child heard the telephone ring the first time, he was frightened and ran to my lap. The first time he heard my laugh, how he turned his head and smiled. In the meantime, you should sign with your baby. If you are enrolled in a deaf school where signing is prohibited - sign secretly. Your child will gravitate towards whatever form of communication is best for them. If your child has no other oral motor complications, as many many parents on this list will tell you, your child will drop the signs as speak picks up. As a parent, you must present all communication options available to your baby - whatever it takes to communicate with your child. I wish I had done that. Learn from my mistakes. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Jo, 5 words! Fantastic! I'm looking forward to that. Thanks for sharing, DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 6 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I agree with Rose that some of the therapies for autism are awesome in helping some children. Kendra didn't communicate until she went to a Behavior Analysis program and it helped immediately. We still have a long way to go, but that program was dramatic for her in that people said she was WAY past the window of opportunity to be able to learn to sign expressively. I don't go by that 'window of opportunity' argument anymore, needless to say. I also am of the opinion that autistic traits can be responsive to various biochemical interventions such as medications, and certain nutritional supplements under guidance of a trained and qualified health provider. There's a vast explosion of exciting information and research right now looking at autism and the autism spectrum. As for not responding to sound, I think auditory dissynchrony should also be considered in some children who should be able to hear, but are not responsive to sound. There are lots of other therapies that can help with sensory issues, for example, sensory-integration therapy, cranial-sacral therapy, osteopathic manipulation, etc. RE: Cochlear implant As a parent, in my most humble of opinions, I would just like to add that if your child is not responding to sound and should be, because they are hearing something, and the child is young, please seek out evaluation by a behavior analyst who specializes in autism. Your child may NOT have autism but due to their MULTI-SENSORY IMPAIRMENTS may have characteristics that are similar to autism. Our official diagnosis is " PDD tendencies " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I agree with Rose that some of the therapies for autism are awesome in helping some children. Kendra didn't communicate until she went to a Behavior Analysis program and it helped immediately. We still have a long way to go, but that program was dramatic for her in that people said she was WAY past the window of opportunity to be able to learn to sign expressively. I don't go by that 'window of opportunity' argument anymore, needless to say. I also am of the opinion that autistic traits can be responsive to various biochemical interventions such as medications, and certain nutritional supplements under guidance of a trained and qualified health provider. There's a vast explosion of exciting information and research right now looking at autism and the autism spectrum. As for not responding to sound, I think auditory dissynchrony should also be considered in some children who should be able to hear, but are not responsive to sound. There are lots of other therapies that can help with sensory issues, for example, sensory-integration therapy, cranial-sacral therapy, osteopathic manipulation, etc. RE: Cochlear implant As a parent, in my most humble of opinions, I would just like to add that if your child is not responding to sound and should be, because they are hearing something, and the child is young, please seek out evaluation by a behavior analyst who specializes in autism. Your child may NOT have autism but due to their MULTI-SENSORY IMPAIRMENTS may have characteristics that are similar to autism. Our official diagnosis is " PDD tendencies " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 hi DeAnn, that is soooo cute!! we've been signing with Josh since he was about 6 months maybe?? , hard to remember :0) ... he said a 5 word sign sentence last week - i think he is trying to emulate his big bro who talks non-stop it seems! the sentence? ... " no sleep, more singing jumping " ... yup he is also cutting out that day-time nap ;0) regards, Jo ds Ben 4 years old, ds Josh 18 months CHaRGE'r ----- Original Message ----- > Rose, I completely agree with you. I have been signing to Whitney sense the > beginning. She has amazed us with the ability to sign Mom at 4 months old, > and recently has shown that she understands what the sign means. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I totally agree with Rose here, about the signing (which I see your already doing from your other email), the early eval and the early implantation if it possible. With the signing, we are so glad we ignored all the " experts " who told us not to if she was going to get a CI. At one point we were almost denied a CI strictly because we signed with . We asked them if they could guarantee would be able to hear and speak with a CI - they said that couldn't guarantee that (we knew that ;-) and we replied that we were not going to deprive our child of communication now, on a " might be " in the future. We basically called their bluff and they backed down. Of course we were labeled " Difficult " parents after that point, but in the end, we were proven right. did not qualify for a CI - a decision made only a couple of months ago when she was almost 2 yrs old. At this time she knows at least 40 signs, and can communicate her needs and wants at a level consistent with any 2 yr old (if not better). Her favorite 2 signs are " Horse " (which she signs the minute she gets to her preschool to tell you that she wants to ride the rocking horse) and " Bed " (which she uses to indicate she wants a pillow or blanket to lay on - she's gotten quite spoiled that she will not lay on the floor anymore without something soft under her head). She always gives a cut little giggle when she gets what she asks for. Kind of a " they UNDERSTAND me " reaction. I can't imagine if we had not signed with her the beginning - where she would be emotionally, cognitively, and socially. It makes me pretty angry to this day. I consider their " advice " borderline abusive. It is nice that we have since been supported by other " experts " who feel we made the right decision. Christian Lobaugh Husband to Ingrid, Father to (5) and (2 yr old charger) RE: Cochlear implant DeAnn - you are fortunate that you can think about implanting at such a young age. We had to wait till our son was almost 2 years old. He was implanted at 19 months and activated at 20 months. We had no form of communication with our child until then because all the " experts " at the deaf schools told us he would never learn to talk if we used signed language and we believed them. He is five now. If I were you, I would do all my evals now. If all goes well and your child has an auditory nerve that works I would push to have your child implanted for your baby's first birthday. You never know what other problems will come up at the cochlear implant center. Cochlear implant scheduling is cumbersome. There is always a waiting list. There are other ENT emergency's that come up. A member of your implant team may be unavailable for some time due to travel or illness (that happened to us) and so you need to be ready to " GO " as soon as your cleared for the surgery. The sooner your child has access to sound, the better for you and your family. I remember when my child heard the telephone ring the first time, he was frightened and ran to my lap. The first time he heard my laugh, how he turned his head and smiled. In the meantime, you should sign with your baby. If you are enrolled in a deaf school where signing is prohibited - sign secretly. Your child will gravitate towards whatever form of communication is best for them. If your child has no other oral motor complications, as many many parents on this list will tell you, your child will drop the signs as speak picks up. As a parent, you must present all communication options available to your baby - whatever it takes to communicate with your child. I wish I had done that. Learn from my mistakes. Rose Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org <http://www.chargesyndrome.org> 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 hi DeAnn, yeah, it was so cute - even if i was tired and wanted him to have a nap :0) ... i haven't managed to start teaching him Mum or Dad yet, they looked a bit hard, most of the signs he does we've made up ourselves and use pretty 'chunky' or 'large' signs, he is just starting to do more fine motor things, so more defined signs will get easier hopefully ... in fact you have inspired me i'll look up Mum and Dad again (i have just been given a NZSL dictionary!), and start using those as our next ones to learn, thanks for the idea, it would be neat to be signed " mummy " :0) he does seem to have 'spurts' of coming out with new signs all at once, " swing " the other day, and i swear he wanted to go to the park while we were on our way to the supermarket this morning ... i can hardly believe how much easier doing regular things is now! Jo ds Ben, ds Josh one and a half years old:0) ----- Original Message ----- Fantastic! I'm looking forward to that Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 DeAnn, Just to complicate all of your decisions you have to make, I want to put in my vote for using cued speech at this early age if you plan to implant your child. Cued speech teaches your child phonics and English and makes an easy transiton for your child to move to spoken English later on. Cued speech could give your daughter a complete understanding of English before she can hear. It has been a wonderful tool for my son. We didn't start it until after troubles with the implant and I would give anything to reverse time and start cuing to him as a baby. There are so many decisions to make! Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I just sent an e-mail about cued speech and didn't sign my name. Oops, Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Deedee, thanks for the advice. I know ASL, but know nothing about Cued speech. I could see how that would benefit Whitney. Do you know where I can get info on cued speech? Thanks, DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 6 moths. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 I've heard wonderful things about Cued speech. The problem is, that it is fairly rare, and with any communication decision you make, you need to have good resources. You should check into Cued speech, but make sure you've got some local resources before you add it as a viable communication option. Also - I've heard a lot of arguments from people against ASL as a first language because it does not use English syntax. From my knowledge of language studies, and child development, I don't really buy into that. I believe the more language you give a child at the earliest age possible, will expand their total language abilities. There are a lot of experts who feel the same way (although there are many who don't as well). Christian Lobaugh Husband to Ingrid, Father to (5) and (2 yr old charger) Re: RE: Cochlear implant Deedee, thanks for the advice. I know ASL, but know nothing about Cued speech. I could see how that would benefit Whitney. Do you know where I can get info on cued speech? Thanks, DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 6 moths. Quote Link to comment Share on other sites More sharing options...
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