Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 HI Everyone, I need a little perspective here. got his hearing aids in Jan (at 18 mths). He wears them all day (mostly), everyday. The only consonant he says is " m " (like ma ma), but he said that before his aids. Everyone has told me to be patient, but I'm beginning to wonder if there may be some other kind of problem. Since his aids his vowel sounds have increased and the ST says he has great intonation. Sometimes I don't know when to worry and when to wait. It seems like life is mostly about waiting. I would appreciate any ideas and info. Thanks Alissa, mom to Coral 16, Sara 5, Josh 3, 23mths (ChaRGE) and 8mths. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Alissa- I don't think Aubrie had any more sounds than that at ' age. My first thought is to agree that you need to be patient -- but that's assuming that you have all the best, aggressive therapy you can access. Aubrie didn't speak well enough to give up signing until about age 4, I think. She didn't get aids til age 3, but she has only a mild-mod loss in her best ear. Michele W mom to Aubrie (6 yrs) CHaRgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hi, I know this is different as Jack has no hearing loss but he didn't say any proper words until he was 2.5yrs old and even then they were quite unclear. However, he quickly progressed and his speech is amazing if still a little strange sounding. He is a very confident little boy and can express himself very well. We did use Makaton sign language from when he was around 18mths old and this was the stepping stone he needed to attain communication. He was very frustrated before we started using Makaton as he wanted to communicate but wasn't able to. Once he started using speech he stopped using Makaton (around 3yrs old). A funny thing happened last month. We were at our Special Needs Sports Day and Jack met a little boy with Downs Syndrome () who is coming to Jack's school in August. loves Jack and wouldn't leave his side. uses Makaton and within a short period showed Jack the signs for Mum, Dad, ,, Jack, Good etc and Jack was using them. He still remembered them It always amazes me how intelligent these kids are. Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hi, I know this is different as Jack has no hearing loss but he didn't say any proper words until he was 2.5yrs old and even then they were quite unclear. However, he quickly progressed and his speech is amazing if still a little strange sounding. He is a very confident little boy and can express himself very well. We did use Makaton sign language from when he was around 18mths old and this was the stepping stone he needed to attain communication. He was very frustrated before we started using Makaton as he wanted to communicate but wasn't able to. Once he started using speech he stopped using Makaton (around 3yrs old). A funny thing happened last month. We were at our Special Needs Sports Day and Jack met a little boy with Downs Syndrome () who is coming to Jack's school in August. loves Jack and wouldn't leave his side. uses Makaton and within a short period showed Jack the signs for Mum, Dad, ,, Jack, Good etc and Jack was using them. He still remembered them It always amazes me how intelligent these kids are. Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Hi, I know this is different as Jack has no hearing loss but he didn't say any proper words until he was 2.5yrs old and even then they were quite unclear. However, he quickly progressed and his speech is amazing if still a little strange sounding. He is a very confident little boy and can express himself very well. We did use Makaton sign language from when he was around 18mths old and this was the stepping stone he needed to attain communication. He was very frustrated before we started using Makaton as he wanted to communicate but wasn't able to. Once he started using speech he stopped using Makaton (around 3yrs old). A funny thing happened last month. We were at our Special Needs Sports Day and Jack met a little boy with Downs Syndrome () who is coming to Jack's school in August. loves Jack and wouldn't leave his side. uses Makaton and within a short period showed Jack the signs for Mum, Dad, ,, Jack, Good etc and Jack was using them. He still remembered them It always amazes me how intelligent these kids are. Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Alissa- You may be doing everything there is to do. Sounds like you are. We also did the lessons. It was very helpful in the beginning. Then we got hooked up with our state School for the Deaf infant-toddler program and dropped off from using the materials. One thing that was wonderful for us was learning how to sign Aubrie's favorite book. Once I could sign her the story and she could sign back just one word, I knew that she was comprehending. The book was " The Little Mouse, The Big Hungry Bear, and The Red Ripe Strawberry " . It has very beautiful, large, clear illustrations with few words. She could sign " bear " and " mouse " . Just enough that she could tell me what was coming next. For me, knowing that she understood was so exciting. Without sign, I would not have had a clue. You are on the right track. Keep going. Be persistent but patient. He's got to take it all in a long time before he will be ready to give it back. Oh-- another thing -- if he is hearing well, you will have to make him look at you to see the signs. I would actually tell Aubrie when she was 2 and 3 yrs old that she had to look at me to see the sign so she could sign it back to me. She didn't have to look at the signs to " hear " me, but she did if she wanted to be able to talk back. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Alissa- You may be doing everything there is to do. Sounds like you are. We also did the lessons. It was very helpful in the beginning. Then we got hooked up with our state School for the Deaf infant-toddler program and dropped off from using the materials. One thing that was wonderful for us was learning how to sign Aubrie's favorite book. Once I could sign her the story and she could sign back just one word, I knew that she was comprehending. The book was " The Little Mouse, The Big Hungry Bear, and The Red Ripe Strawberry " . It has very beautiful, large, clear illustrations with few words. She could sign " bear " and " mouse " . Just enough that she could tell me what was coming next. For me, knowing that she understood was so exciting. Without sign, I would not have had a clue. You are on the right track. Keep going. Be persistent but patient. He's got to take it all in a long time before he will be ready to give it back. Oh-- another thing -- if he is hearing well, you will have to make him look at you to see the signs. I would actually tell Aubrie when she was 2 and 3 yrs old that she had to look at me to see the sign so she could sign it back to me. She didn't have to look at the signs to " hear " me, but she did if she wanted to be able to talk back. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 When was a baby, 's hearing was misunderstood. We tried BTE aids and she refused to wear them. She fussed and took them out. It was a huge battle. The audiologist suggested not using them because he didn't think they were benefiting her since she rejected them. The aids were a trial as her hearing test was inconclusive. At age 13, the truth was realized about 's hearing. We again went with BTE aids. It was still a major battle getting her to wear them. 2 years ago, I started looking into a BAHA (bone anchored hearing aid). Test wise, responded better to bone conduction than air conduction so we opted to go with a bone conduction aid. We didn't know if she would wear it because she hates headbands and anything on her head. The audiologist put in on her and she has accepted it ever since. She puts it on first thing in the morning and most days, we don't get it off of her until after she falls asleep. I know your question is more focused towards the vocal sounds. over the years did make many more sounds without the hearing aid than she does now. However, by the testing, we were not sure she was hearing the speech sounds with the air conduction aid. With the bone conduction aid, she does respond to sounds in the speech range. I think with the make up of some of our kids' inner ears, air conduction aids are not always going to give them the maximum benefit. You might explore, if you haven't, to see if bone he responds better to bone conduction than the type of aids he currently has. After the fact, her audiologist said he didn't even think of bone conduction until I asked if he would test the difference between the two. Now he kicks himself for not thinking of it sooner. Just a thought... Sheryl Mom to Mitch 18 and 17 CHARGE > HI Everyone, > > I need a little perspective here. > > got his hearing aids in Jan (at 18 mths). He wears them all > day > (mostly), everyday. The only consonant he says is " m " (like ma ma), > but he > said that before his aids. Everyone has told me to be patient, but > I'm > beginning to wonder if there may be some other kind of problem. > Since his > aids his vowel sounds have increased and the ST says he has great > intonation. Sometimes I don't know when to worry and when to wait. > It seems > like life is mostly about waiting. > > I would appreciate any ideas and info. > > Thanks > > Alissa, mom to Coral 16, Sara 5, Josh 3, 23mths (ChaRGE) > and 8mths. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi Alyssa, I would definitely give it a lot more time. If your son didn't get aided until 18 mths, that is 18 mths of hearing nothing that he has to first process. My son was aided at 3 mths old and began to speak around age 2, and his speech was very fast and unclear until about age 4. He has a severe to profound loss. He is now 7 and has a BAHA and his speech has improved to conversational level, but he speaks slowly due to the facial nerve palsy, and also because he has to put together the language before he speaks. He replaces and fills in incorrect words like take for bring, doesn't use plurals etc. Even though they are aided, they still miss a great deal of speech and sounds and if they don't hear it, they can't reproduce the sound until they are taught. For example, if you ask my son to say the word ketchup, he will say etchup, missing the K, but if he sees it, he will say " can I have the Ketchup " . That is why speech therapy is so important. It is so cool how they can be taught to make the sounds of letters and words that they don't hear, they just know that is what it is. It is good your son is wearing the aids, it means they are benefiting him. Hang in there, it's a slow process Debbie Matasker > HI Everyone, > > I need a little perspective here. > > got his hearing aids in Jan (at 18 mths). He wears them all > day > (mostly), everyday. The only consonant he says is " m " (like ma ma), > but he > said that before his aids. Everyone has told me to be patient, but > I'm > beginning to wonder if there may be some other kind of problem. > Since his > aids his vowel sounds have increased and the ST says he has great > intonation. Sometimes I don't know when to worry and when to wait. > It seems > like life is mostly about waiting. > > I would appreciate any ideas and info. > > Thanks > > Alissa, mom to Coral 16, Sara 5, Josh 3, 23mths (ChaRGE) > and 8mths. 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 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...
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