Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Sandy, it's ok to cry.... Olivia (she's now 9) was diagnosed with autism when she was 4 1/2, and with MDS when she was about a year and a half. Autism is not all that uncommon, and there are lots of resources to check out. From what I've read in books, most of the kids with MDS end up with autism, or another " diagnosis " as well. It is a challenge. But just remember the love you have for your child. And your baby needs you more than anyone. No matter the challenge, you can get through it. No matter how many times you want to cry, you will get through it. There is no stronger bond than a mother's love for her baby. Opportunities are out there for help. Don't take NO for an answer. It's going to be ok. Even when it feels like it's not going to be.... know that it will be. If you want to email me off the site, please feel free to do so sophialouisaart@... big hugs & lots of love Sophia & Olivia Nordgren wrote: Guys, please help me. I am crying as I write this because it just dawned on me that Kaylee may be autistic. My husband and I have been trying to figure out why there has been such a change in Kaylee, it was something that we would comment on from time to time but we didnt worry too much about it because babies change and grow so quickly, it was kind of easy to pass it off as a phase. I met with her OT and a speech therapist today and they both seemed concerned after they met with her but they did not offer any explanations to me. Kaylee has her two year physical tomorrow and they told me to talk to her pediatrician about it. Over the summer Kaylee really seemed to thrive. She began walking and we were really excited with her verbal skills. She would chase the cat around the house yelling, " cat, cat " . She would say " up " when she wanted to be held. She had a few very clear words, she used her few words very well, she knew what they meant. She would also mimic sounds well (consonants and vowels) not forming words but practicing the sounds in language that she heard around her. Soon after she really took off with walking she began to loose her verbal skills. She still says " da, da " but not so much in reference to her dad as it is just to babble. She does not even say " ma, ma " anymore. She comunicates now by grunting, completely unlike she was this summer. I am scared, I layed awake in bed and at about 11 pm the thought of autism crossed my mind. Does anyone have any experience with loss of speech for an extended period of time (about 5 months now)? Do children with MDS have an increased chance of developing autism?? Please help me. I cant stop crying. Sandy __________________________________________________________ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Sandy - Think about Kaylee - is she loving, does she like to be cuddled? Does she want to be held? Does she zone out and do repetitive things and not want you involved? These are the other traits of autism (other than lack of speech). Darlene > Sandy, it's ok to cry.... > > Olivia (she's now 9) was diagnosed with autism when she was 4 1/2, and > with MDS when she was about a year and a half. Autism is not all that > uncommon, and there are lots of resources to check out. From what I've read > in books, most of the kids with MDS end up with autism, or another > " diagnosis " as well. It is a challenge. But just remember the love you have > for your child. > > And your baby needs you more than anyone. > > No matter the challenge, you can get through it. > > No matter how many times you want to cry, you will get through it. There > is no stronger bond than a mother's love for her baby. Opportunities are out > there for help. Don't take NO for an answer. > > It's going to be ok. > > Even when it feels like it's not going to be.... know that it will be. > > If you want to email me off the site, please feel free to do so > sophialouisaart@... <sophialouisaart%40yahoo.com> > > big hugs & lots of love > > Sophia > & Olivia > > > Nordgren <snordgren6@... <snordgren6%40yahoo.com>> wrote: > Guys, please help me. I am crying as I write this > because it just dawned on me that Kaylee may be > autistic. > > My husband and I have been trying to figure out why > there has been such a change in Kaylee, it was > something that we would comment on from time to time > but we didnt worry too much about it because babies > change and grow so quickly, it was kind of easy to > pass it off as a phase. I met with her OT and a > speech therapist today and they both seemed concerned > after they met with her but they did not offer any > explanations to me. Kaylee has her two year physical > tomorrow and they told me to talk to her pediatrician > about it. > > Over the summer Kaylee really seemed to thrive. She > began walking and we were really excited with her > verbal skills. She would chase the cat around the > house yelling, " cat, cat " . She would say " up " when > she wanted to be held. She had a few very clear > words, she used her few words very well, she knew what > they meant. She would also mimic sounds well > (consonants and vowels) not forming words but > practicing the sounds in language that she heard > around her. Soon after she really took off with > walking she began to loose her verbal skills. She > still says " da, da " but not so much in reference to > her dad as it is just to babble. She does not even > say " ma, ma " anymore. She comunicates now by > grunting, completely unlike she was this summer. > > I am scared, I layed awake in bed and at about 11 pm > the thought of autism crossed my mind. Does anyone > have any experience with loss of speech for an > extended period of time (about 5 months now)? Do > children with MDS have an increased chance of > developing autism?? Please help me. I cant stop > crying. > > Sandy > > __________________________________________________________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 This does not mean that she absolutely has Autism. It even could be that she is just working on other skills (unseen) and isn't interested in talking. She could even have fluid in her ears. I know it is hard not to worry about things that 'could' happen. But, you'll drive yourself crazy doing that. I don't know what your therapists told you, but remember that just a couple of weeks ago we had that issue of the therapists upsetting Sue and it was unreasonable to think Isabella at 12 months couldn't point to her body parts! So...during your doctor visit today tell him about all your concerns and go from there. (write a list to take to the doctor so you don't forget anything) And, when you come home, email us and tell us what the doctor says. (I am holding my breath with you!) Kristy Nordgren wrote: Guys, please help me. I am crying as I write this because it just dawned on me that Kaylee may be autistic. My husband and I have been trying to figure out why there has been such a change in Kaylee, it was something that we would comment on from time to time but we didnt worry too much about it because babies change and grow so quickly, it was kind of easy to pass it off as a phase. I met with her OT and a speech therapist today and they both seemed concerned after they met with her but they did not offer any explanations to me. Kaylee has her two year physical tomorrow and they told me to talk to her pediatrician about it. Over the summer Kaylee really seemed to thrive. She began walking and we were really excited with her verbal skills. She would chase the cat around the house yelling, " cat, cat " . She would say " up " when she wanted to be held. She had a few very clear words, she used her few words very well, she knew what they meant. She would also mimic sounds well (consonants and vowels) not forming words but practicing the sounds in language that she heard around her. Soon after she really took off with walking she began to loose her verbal skills. She still says " da, da " but not so much in reference to her dad as it is just to babble. She does not even say " ma, ma " anymore. She comunicates now by grunting, completely unlike she was this summer. I am scared, I layed awake in bed and at about 11 pm the thought of autism crossed my mind. Does anyone have any experience with loss of speech for an extended period of time (about 5 months now)? Do children with MDS have an increased chance of developing autism?? Please help me. I cant stop crying. Sandy __________________________________________________________ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 I have to tell you that the thought of autism scares me. I did not know that most children with mds also have autism. This is the first I have heard of this from anyone. Isabella is also doing the same thing. She is working on walking and is losing her speech. Now I am worried also. Sue (Isabella's mom (1) ) -------------- Original message -------------- Sandy, it's ok to cry.... Olivia (she's now 9) was diagnosed with autism when she was 4 1/2, and with MDS when she was about a year and a half. Autism is not all that uncommon, and there are lots of resources to check out. From what I've read in books, most of the kids with MDS end up with autism, or another " diagnosis " as well. It is a challenge. But just remember the love you have for your child. And your baby needs you more than anyone. No matter the challenge, you can get through it. No matter how many times you want to cry, you will get through it. There is no stronger bond than a mother's love for her baby. Opportunities are out there for help. Don't take NO for an answer. It's going to be ok. Even when it feels like it's not going to be.... know that it will be. If you want to email me off the site, please feel free to do so sophialouisaart@... big hugs & lots of love Sophia & Olivia Nordgren wrote: Guys, please help me. I am crying as I write this because it just dawned on me that Kaylee may be autistic. My husband and I have been trying to figure out why there has been such a change in Kaylee, it was something that we would comment on from time to time but we didnt worry too much about it because babies change and grow so quickly, it was kind of easy to pass it off as a phase. I met with her OT and a speech therapist today and they both seemed concerned after they met with her but they did not offer any explanations to me. Kaylee has her two year physical tomorrow and they told me to talk to her pediatrician about it. Over the summer Kaylee really seemed to thrive. She began walking and we were really excited with her verbal skills. She would chase the cat around the house yelling, " cat, cat " . She would say " up " when she wanted to be held. She had a few very clear words, she used her few words very well, she knew what they meant. She would also mimic sounds well (consonants and vowels) not forming words but practicing the sounds in language that she heard around her. Soon after she really took off with walking she began to loose her verbal skills. She still says " da, da " but not so much in reference to her dad as it is just to babble. She does not even say " ma, ma " anymore. She comunicates now by grunting, completely unlike she was this summer. I am scared, I layed awake in bed and at about 11 pm the thought of autism crossed my mind. Does anyone have any experience with loss of speech for an extended period of time (about 5 months now)? Do children with MDS have an increased chance of developing autism?? Please help me. I cant stop crying. Sandy __________________________________________________________ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Most children with MDS DO NOT have Autism! The last recorded study for Down syndrome and Autism (not MDS...we are working to get a study) said that 10% of the Down syndrome community had Autism. This was (at the time) a higher incidence of Autism than the typical community. But, that was a statistic and it still was low considering the Down syndrome community. 10% is not a high number! Now...let me say a few things about Autism and about development. In my experience, every child that I have met that has MDS and a form of Autism the " Autism " has always been Asperger syndrome. This form of Autism is a different kind of Autism and is NOT a non-verbal Autism. In fact, it is the opposite! People with Asperger syndrome not only talk, but they have a very large vocabulary and usually express themselves with the biggest words possible. One example: Tim has Asperger syndrome. When he was in high school some boys got into a fight outside of the school. Instead of saying, " The boys got mad at each other and beat each other up. " He said, " There was an altercation between two 10th grade boys. Their faces were twisted into fits of rage. One boy fiercely threw a punch that landed the other boy onto the ground. Then they both began swinging their fists hitting one another until the teacher came to halt their altercation. " (LOL Welcome to my world!) My point is, people with MDS that are going to have Autism have Asperger syndrome and it is NOT non-verbal! As for development.... When a baby or toddler is developing, they work on one thing at a time. Sometimes, these things may not even be visible to you. They may be working on fine motor skills that you have no idea are taking place. They may be just growing physically and that is taking all their concentration. So...they work on one thing at a time. They learn to talk some, they have the basic words down, but then, the concentrate on crawling or walking. So...all their energy is focused on that skill instead of what they just learned to do. They may drop the talking or not increase the talking until they get the crawling or walking down, then, they will pick it back up. This happens with all kids. Not just kids with MDS. Don't worry so much. In time, everything will fall into place. I hope this helps Kristy dewardjohnson@... wrote: I have to tell you that the thought of autism scares me. I did not know that most children with mds also have autism. This is the first I have heard of this from anyone. Isabella is also doing the same thing. She is working on walking and is losing her speech. Now I am worried also. Sue (Isabella's mom (1) ) -------------- Original message -------------- From: Sophia Louisa Sandy, it's ok to cry.... Olivia (she's now 9) was diagnosed with autism when she was 4 1/2, and with MDS when she was about a year and a half. Autism is not all that uncommon, and there are lots of resources to check out. From what I've read in books, most of the kids with MDS end up with autism, or another " diagnosis " as well. It is a challenge. But just remember the love you have for your child. And your baby needs you more than anyone. No matter the challenge, you can get through it. No matter how many times you want to cry, you will get through it. There is no stronger bond than a mother's love for her baby. Opportunities are out there for help. Don't take NO for an answer. It's going to be ok. Even when it feels like it's not going to be.... know that it will be. If you want to email me off the site, please feel free to do so sophialouisaart@... big hugs & lots of love Sophia & Olivia Nordgren wrote: Guys, please help me. I am crying as I write this because it just dawned on me that Kaylee may be autistic. My husband and I have been trying to figure out why there has been such a change in Kaylee, it was something that we would comment on from time to time but we didnt worry too much about it because babies change and grow so quickly, it was kind of easy to pass it off as a phase. I met with her OT and a speech therapist today and they both seemed concerned after they met with her but they did not offer any explanations to me. Kaylee has her two year physical tomorrow and they told me to talk to her pediatrician about it. Over the summer Kaylee really seemed to thrive. She began walking and we were really excited with her verbal skills. She would chase the cat around the house yelling, " cat, cat " . She would say " up " when she wanted to be held. She had a few very clear words, she used her few words very well, she knew what they meant. She would also mimic sounds well (consonants and vowels) not forming words but practicing the sounds in language that she heard around her. Soon after she really took off with walking she began to loose her verbal skills. She still says " da, da " but not so much in reference to her dad as it is just to babble. She does not even say " ma, ma " anymore. She comunicates now by grunting, completely unlike she was this summer. I am scared, I layed awake in bed and at about 11 pm the thought of autism crossed my mind. Does anyone have any experience with loss of speech for an extended period of time (about 5 months now)? Do children with MDS have an increased chance of developing autism?? Please help me. I cant stop crying. Sandy __________________________________________________________ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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