Guest guest Posted March 17, 2006 Report Posted March 17, 2006 Hi Cristy, welcome to the group! We don't usually have so much contraversy My name is Amnesty, I am an ABA consultant in CA. I just wanted to ask you if you have worked with your daughter on alternative forms of communication? I know many people (including a lot of spech therapists) figure once a child HAS verbal skills, that's all they need, but in my experience, it is not enough. Most autistic people are very visual, so using things like pictures, or even written words, are MUCH easier for them, and also allow a greater range of thoughts to be expressed. At 5, there is no reason she could not begin learning to read and type. Typing is better than writing because it requires less fine motor coordination (one finger typing still gets the point across!) I know that several of our adults with autism on this group communicate extremely well through typing, but say they have more difficulty with face to face conversations. Actually, it is true for me too. I taught myself to read at a very young age because written words make a lot more sense to me than spoken. There are words I wouldn't use as a child until I had seen them written, so I could be sure I was getting them " right. " Even now, I visualize words when I think, it helps organize my thoughts. My own 2 year old is turning out to be the same way. HTH, Amnesty --- In Autism_in_Girls , " Cristy Estep " > It's not that I want to change who she is. But she has alot of > flustration over not being able to communicate her needs, since > she's getting older they are more complicated. She does have some > speech, even sentences. But it seems her mouth won't work much of > the time when she wants it too and it's hard to see her having such > a hard time. I don't want to take who she is away. I just want to > see her aquire skills that makes it easier for her to be who she is. Quote
Guest guest Posted March 17, 2006 Report Posted March 17, 2006 Welcome Cristy, I'm Debi, mom to 3 girls, 8, 6, & 3. My 6 yr old has autism. It can be very hard to watch our girls struggle. I remember when my super smart nephew dropped out of high school just because. I told his mother it made me sick to see him with all his abilities quit school when he could be so much academically while I watched my daughter struggle for years to learn to say " mamma " . Life is hard. But I've also learned over the years that even people who are perceived as very popular do struggle with feelings of insecurity, of feeling like an outsider, and finding true friends. Is your daughter getting any therapy? Are you doing any biological treatments? What part of the country do you live in, or are you outside of USA? Debi Quote
Guest guest Posted March 17, 2006 Report Posted March 17, 2006 Welcome. I am an adult female living with autism. I hope I can be of some help. There are great people in this group and more information than you could ever hope for. Our diverse group gives many perspectives. Don't be afraid to ask questions. We will all try our best. Nadine New here, wanted to introduce myself Hi everyone. I'm really glad to have finally found a list like this one. My daughter has just turned 5. She was DX'ed at 18 months. I've been seeking out other mothers with daughters on the spectrum for quite awhile. They are hard to find here where I live. Alot of the information I've read about autism doesn't seem to describe the issues that we've had problems with in much detail. They seem more related to aspergers. I also can't seem to get over the sorrow of my daughter having such limitations and was wondering if this was the case for alot of you. It's not that I want to change who she is. But she has alot of flustration over not being able to communicate her needs, since she's getting older they are more complicated. She does have some speech, even sentences. But it seems her mouth won't work much of the time when she wants it too and it's hard to see her having such a hard time. I don't want to take who she is away. I just want to see her aquire skills that makes it easier for her to be who she is. I've read some of the post here and notice that there is alot of the controversy that I've seen on other boards. Adult autistics claiming that moms want to change who our children are, we don't accept who they are and, well, you know the rest. Although no formal DX of autism has been made with me I know the types of challenges my daughter faces. I have been DXed with everything you can think of though, so to me a lable is just a lable, who cares? We all have unique challenges, or quirks that others might think strange. Even if you don't have formal Dx of something. I do think that as a mom with a daughter who faces challenges like I've faced all my life there is a fear that they will feel the pain that we've always felt and that scares us. I live in dread that my daughter will be fighting all her life to seem normal and fit in and that scares the hell out of me. I hate trying to pull it off everyday. Who would want their child to feel like a total outsider? Or to have to avoid alot of things because they batter the senses? To be too sensitive to some things, or to not be able to pick up on social cues, get a joke, whatever. To feel less than is an awful feeling. I've been dealing with all my life. And just finally working through at 38. I certainly don't want my daughter to have to deal with it. I guess if that makes me a bad mother, or a good one, well it's all just judgements other people make about you. like lables it doesn't really matter. What matters it that we try to accept our children, each other, and ourselves. If we don't who will? Hope I didn't get on a soapbox too long, this being my first time on here. I just read alot of your posts and had to put my two cents in. Cristy Autism_in_Girls-subscribe ------------------------ Autism_in_Girls-unsubscribe Quote
Guest guest Posted March 17, 2006 Report Posted March 17, 2006 Welcome Cristy! Don't worry, we have our moments of controversy (and once in a while we get a little stuck on having to have the last word) but we pull together. We are each other's biggest fans! I have found so much wisdom, kindness, and honesty here, and I know you will too! It's great to have you with us! Sandi (Allie's Mom) Houston Quote
Guest guest Posted March 17, 2006 Report Posted March 17, 2006 To: New Here I was wondering if your daughter might be helped if you taught her some simple sign language. Then she would would have another option when she wants to express herself but can't get the words right. Best of luck. Anastasia Quote
Guest guest Posted March 18, 2006 Report Posted March 18, 2006 Anastasia happy to see you words back here , have not seen of them in long time. welcome back.. Sondra adult with HFA in Ohio In Autism_in_Girls , " Anastasia E. OMelveny " wrote: > > > > To: New Here > > I was wondering if your daughter might be helped if you taught her some > simple sign language. Then she would would have another option when she > wants to express herself but can't get the words right. > > Best of luck. > > Anastasia > Quote
Guest guest Posted March 21, 2006 Report Posted March 21, 2006 Amnesty, I've been trying to figure out a way to help her read. I was thinking of trying the PECS again. Before when we did them she just tore them off the board and chewed them. I do pull them out for emergency situations, like when she's crying and we have no idea of what she wants. I used Picture this software to make her pictures of things around the house. She didn't seem to get the others with the drawn pictures. I can't figure out how to type words under them though. I was thinking of working with them again and writing the words on the bottom. Also, I don't know how much she knows already so I'm puzzled at where to start. I know she knows her alphabet and colors numbers to 20. But not sure if she really gets what they're for. I also thought some games would be good but she seems to not get the concept of what a game is. She just likes to do things over and over, even on the computer. Do you have any suggestions for me on all this. I would really appreciate some new ideas. Cristy > > Hi Cristy, welcome to the group! > We don't usually have so much contraversy > My name is Amnesty, I am an ABA consultant in CA. I just wanted to ask > you if you have worked with your daughter on alternative forms of > communication? I know many people (including a lot of spech > therapists) figure once a child HAS verbal skills, that's all they > need, but in my experience, it is not enough. Most autistic people are > very visual, so using things like pictures, or even written words, are > MUCH easier for them, and also allow a greater range of thoughts to be > expressed. At 5, there is no reason she could not begin learning to > read and type. Typing is better than writing because it requires less > fine motor coordination (one finger typing still gets the point > across!) I know that several of our adults with autism on this group > communicate extremely well through typing, but say they have more > difficulty with face to face conversations. Actually, it is true for > me too. I taught myself to read at a very young age because written > words make a lot more sense to me than spoken. There are words I > wouldn't use as a child until I had seen them written, so I could be > sure I was getting them " right. " Even now, I visualize words when I > think, it helps organize my thoughts. My own 2 year old is turning out > to be the same way. > HTH, > Amnesty > > --- In Autism_in_Girls , " Cristy Estep " > It's not that > I want to change who she is. But she has alot of > > flustration over not being able to communicate her needs, since > > she's getting older they are more complicated. She does have some > > speech, even sentences. But it seems her mouth won't work much of > > the time when she wants it too and it's hard to see her having such > > a hard time. I don't want to take who she is away. I just want to > > see her aquire skills that makes it easier for her to be who she is. > Quote
Guest guest Posted March 21, 2006 Report Posted March 21, 2006 Debi, I homeschool my daughter Hope, and her brother too. We live in Tennessee and the school program here was so awful. You have to fight long and hard for any kind of therapy. Since we don't qualify for anything so far, due to income, & don't have insurance, I do everything myself. I figured trying to do it myself would be a better use of my time than fighting the school board for just a little bit of therapy. She's done alot better since we started the diet, chelation, & suppliments. It seemed that before we started the chelation and suppliments nothing would stick. She did get therapy for about a year and a half from the early intervention system before she turned three, thankfully I learned a lot from them. But we never saw progress untill the bio treatments. I know that even seemingly normal people have issues and feel insecure. People tell me all the time how I handle things so well and have so much patience and such when inside I feel like I'm just coming apart. It's been so hard for me to stop worring all the time over how she'll be ten years from now. How do you handle that? I really want to stop worring and be more positive. I know that's the best way to help her and our family. I just can't seem to not be afraid for her all the time. Funny thing is though, that with all her problems she's one of the happies people I've ever known. That keeps me going. It doesn't seem to bother her near as much as it does me. Cristy -- In Autism_in_Girls , " Debi " wrote: > > Welcome Cristy, I'm Debi, mom to 3 girls, 8, 6, & 3. My 6 yr old has > autism. It can be very hard to watch our girls struggle. I remember > when my super smart nephew dropped out of high school just because. I > told his mother it made me sick to see him with all his abilities quit > school when he could be so much academically while I watched my > daughter struggle for years to learn to say " mamma " . > > Life is hard. But I've also learned over the years that even people > who are perceived as very popular do struggle with feelings of > insecurity, of feeling like an outsider, and finding true friends. > > Is your daughter getting any therapy? Are you doing any biological > treatments? What part of the country do you live in, or are you > outside of USA? > > Debi > Quote
Guest guest Posted March 21, 2006 Report Posted March 21, 2006 , Thanks for the welcome. I am so glad to be on here. I've already felt so much better just reading posts and knowing that you're all out there too. I was just feeling so alone before, with no one I know having a girl with this. It really helps to have the opportunity to communicate with others. Do you have a formal DX of autism? Cristy > > Welcome. I am an adult female living with autism. I hope I can be of some > help. There are great people in this group and more information than you > could ever hope for. Our diverse group gives many perspectives. Don't be > afraid to ask questions. We will all try our best. > > > > Nadine > > > > New here, wanted to introduce myself > > > > Hi everyone. I'm really glad to have finally found a list like this > one. My daughter has just turned 5. She was DX'ed at 18 months. I've > been seeking out other mothers with daughters on the spectrum for > quite awhile. They are hard to find here where I live. Alot of the > information I've read about autism doesn't seem to describe the > issues that we've had problems with in much detail. They seem more > related to aspergers. > I also can't seem to get over the sorrow of my daughter having such > limitations and was wondering if this was the case for alot of you. > It's not that I want to change who she is. But she has alot of > flustration over not being able to communicate her needs, since > she's getting older they are more complicated. She does have some > speech, even sentences. But it seems her mouth won't work much of > the time when she wants it too and it's hard to see her having such > a hard time. I don't want to take who she is away. I just want to > see her aquire skills that makes it easier for her to be who she is. > I've read some of the post here and notice that there is alot of the > controversy that I've seen on other boards. Adult autistics claiming > that moms want to change who our children are, we don't accept who > they are and, well, you know the rest. Although no formal DX of > autism has been made with me I know the types of challenges my > daughter faces. I have been DXed with everything > you can think of though, so to me a lable is just a lable, who > cares? We all have unique challenges, or quirks that others might > think strange. Even if you don't have formal Dx of something. > I do think that as a mom with a daughter who faces challenges like > I've faced all my life > there is a fear that they will feel the pain that we've always felt > and that scares us. I live in dread that my daughter will be > fighting all her life to seem normal and fit in and that scares the > hell out of me. I hate trying to pull it off everyday. Who would > want their child to feel like a total outsider? Or to have to avoid > alot of things because they batter the senses? To be too sensitive > to some things, or to not be able to pick up on social cues, get a > joke, whatever. To feel less than is an awful feeling. I've been > dealing with all my life. And just finally working through at 38. I > certainly don't want my daughter to have to deal with it. I guess if > that makes me a bad mother, or a good one, well it's all just > judgements other people make about you. like lables it doesn't > really matter. What matters it that we try to accept our children, > each other, and ourselves. If we don't who will? > Hope I didn't get on a soapbox too long, this being my first time on > here. I just read alot of your posts and had to put my two cents in. > Cristy > > > > > > > > Autism_in_Girls-subscribe > ------------------------ > Autism_in_Girls-unsubscribe > > > > > Quote
Guest guest Posted March 21, 2006 Report Posted March 21, 2006 Cristy, I too live in TN, East TN to be more exact. I know the struggles you talk about. I have to tell you though, please at least file grievances. I know it's hard to fight and spend so much time doing it when your first priority HAS to be your child. At the same time, we HAVE to stand up for our kids or they will keep doing this to everyone. I'd be happy to forward names/addresses/emails/phone nos of how to do it in this state if you like. Also, the autism solution center in Cordova has begun a class action complaint against the entire state. THey need everyone who's been denied FAPE/LRE to join. Honestly, I stay positive through my faith. Jesus said we need to focus on today because today has enough problems of its own, tomorrow will come with its own set. Now this doesn't mean we shouldn't plan or strategize for our kids & what they need. For me, it's taking that anxiety, fear, and panic and praying to The Lord that He will care for it all, and for His guidance. I'm not perfect & I sure don't always do this, but that is for what I strive. Also researching and praying over what treatments we should try. I also a tendancy to compulsively overeat. A dear friend is a recovered alcoholic, been clean for 15 years. She's a substance abuse counselor and has shared some of the 12 steps to me, so I bought a book from Overeaters Anonymous. The 12 steps echo what The Bible says about taking it one day, one second a time if necessary. It also talks about daily accountability, looking back over our day and seeing where we did well and where we fell short, asking for forgiveness and allowing Him to take our guilt away. These have all helped me learn to slow down, focus on doing the best for today, and not being so anxious about the future. I can also tell you that Allie is doing much better 4 years later, because I have got her some of the services/biomedical she's needed. When I feel really down, I look over notes of how far we've come. HTH, Debi Quote
Guest guest Posted March 21, 2006 Report Posted March 21, 2006 The PECS idea might work, I usually have words and pictures on the cards when I do PECS. Can she match? If she can do matching, start having her match written word cards to objects or pictures. If she can't match, start with that and work up to the words! Amnesty > > > > Hi Cristy, welcome to the group! > > We don't usually have so much contraversy > > My name is Amnesty, I am an ABA consultant in CA. I just wanted to > ask > > you if you have worked with your daughter on alternative forms of > > communication? I know many people (including a lot of spech > > therapists) figure once a child HAS verbal skills, that's all they > > need, but in my experience, it is not enough. Most autistic people > are > > very visual, so using things like pictures, or even written words, > are > > MUCH easier for them, and also allow a greater range of thoughts > to be > > expressed. At 5, there is no reason she could not begin learning > to > > read and type. Typing is better than writing because it requires > less > > fine motor coordination (one finger typing still gets the point > > across!) I know that several of our adults with autism on this > group > > communicate extremely well through typing, but say they have more > > difficulty with face to face conversations. Actually, it is true > for > > me too. I taught myself to read at a very young age because > written > > words make a lot more sense to me than spoken. There are words I > > wouldn't use as a child until I had seen them written, so I could > be > > sure I was getting them " right. " Even now, I visualize words when > I > > think, it helps organize my thoughts. My own 2 year old is turning > out > > to be the same way. > > HTH, > > Amnesty > > > > --- In Autism_in_Girls , " Cristy Estep " > It's not > that > > I want to change who she is. But she has alot of > > > flustration over not being able to communicate her needs, since > > > she's getting older they are more complicated. She does have > some > > > speech, even sentences. But it seems her mouth won't work much > of > > > the time when she wants it too and it's hard to see her having > such > > > a hard time. I don't want to take who she is away. I just want > to > > > see her aquire skills that makes it easier for her to be who she > is. > > > Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 Good idea. She can match, but as with most things, it's a matter of getting her to want to. We have some puzzle cards that she's used before, they have a letter, like a capital A, then the card that goes with it has a picture of an apple and the word on the bottom. She has done a few of those. But as soon as she knew I was watching her she quit doing it and hasn't done it again since. It's that way with alot of things. It has to be her own idea. And it seems like she doesn't want you to know what she can do. I keep wondering why. I've tried praise, rewards, and such but it never works for long, then she's no longer interested and screams if you try to make her in any way. That, and wanting to do things over an over, mostly wanting to watch certain parts of videos, or computer games,over and over are our biggest problems. Any suggestions on these? Thanks for the input. Cristy > > > > > > Hi Cristy, welcome to the group! > > > We don't usually have so much contraversy > > > My name is Amnesty, I am an ABA consultant in CA. I just wanted > to > > ask > > > you if you have worked with your daughter on alternative forms of > > > communication? I know many people (including a lot of spech > > > therapists) figure once a child HAS verbal skills, that's all > they > > > need, but in my experience, it is not enough. Most autistic > people > > are > > > very visual, so using things like pictures, or even written > words, > > are > > > MUCH easier for them, and also allow a greater range of thoughts > > to be > > > expressed. At 5, there is no reason she could not begin learning > > to > > > read and type. Typing is better than writing because it requires > > less > > > fine motor coordination (one finger typing still gets the point > > > across!) I know that several of our adults with autism on this > > group > > > communicate extremely well through typing, but say they have more > > > difficulty with face to face conversations. Actually, it is true > > for > > > me too. I taught myself to read at a very young age because > > written > > > words make a lot more sense to me than spoken. There are words I > > > wouldn't use as a child until I had seen them written, so I could > > be > > > sure I was getting them " right. " Even now, I visualize words when > > I > > > think, it helps organize my thoughts. My own 2 year old is > turning > > out > > > to be the same way. > > > HTH, > > > Amnesty > > > > > > --- In Autism_in_Girls , " Cristy Estep " > It's not > > that > > > I want to change who she is. But she has alot of > > > > flustration over not being able to communicate her needs, since > > > > she's getting older they are more complicated. She does have > > some > > > > speech, even sentences. But it seems her mouth won't work much > > of > > > > the time when she wants it too and it's hard to see her having > > such > > > > a hard time. I don't want to take who she is away. I just want > > to > > > > see her aquire skills that makes it easier for her to be who > she > > is. > > > > > > Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 Debi, I would love for you to give me more information. We live in Mt t. I don't know many other moms, and I'm always researching treatments and therapies, or homeschooling my kids, so I'm not very active in the autism community. I know I need to do more. Any information you could give me would be very helpful. I couldn't believe you mentioned the Autism solutions center. We're waiting for an appointment with them right now. They said sometime in April, and I'm so excited. Have you been there? As for faith, I'm starting to feel like I just have to step back and as you said, see how far she really has come. If I can't concentrate on what we need to do today, because of worring about what tomorrow MAY bring, then I won't be much help to her or my family. Sometimes you just need someone to remind you of what you really already know in your heart. Thanks for reminding me. Cristy > > Cristy, I too live in TN, East TN to be more exact. I know the > struggles you talk about. I have to tell you though, please at least > file grievances. I know it's hard to fight and spend so much time > doing it when your first priority HAS to be your child. At the same > time, we HAVE to stand up for our kids or they will keep doing this to > everyone. I'd be happy to forward names/addresses/emails/phone nos of > how to do it in this state if you like. Also, the autism solution > center in Cordova has begun a class action complaint against the > entire state. THey need everyone who's been denied FAPE/LRE to join. > > Honestly, I stay positive through my faith. Jesus said we need to > focus on today because today has enough problems of its own, tomorrow > will come with its own set. Now this doesn't mean we shouldn't plan or > strategize for our kids & what they need. For me, it's taking that > anxiety, fear, and panic and praying to The Lord that He will care for > it all, and for His guidance. I'm not perfect & I sure don't always do > this, but that is for what I strive. Also researching and praying over > what treatments we should try. > > I also a tendancy to compulsively overeat. A dear friend is a > recovered alcoholic, been clean for 15 years. She's a substance abuse > counselor and has shared some of the 12 steps to me, so I bought a > book from Overeaters Anonymous. The 12 steps echo what The Bible says > about taking it one day, one second a time if necessary. It also talks > about daily accountability, looking back over our day and seeing where > we did well and where we fell short, asking for forgiveness and > allowing Him to take our guilt away. These have all helped me learn to > slow down, focus on doing the best for today, and not being so anxious > about the future. > > I can also tell you that Allie is doing much better 4 years later, > because I have got her some of the services/biomedical she's needed. > When I feel really down, I look over notes of how far we've come. > > HTH, > Debi > Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 First, I would recommend you contact janet@... She's a member of the ASA-MiddTN & a wonderful advocate. She is known to attend IEP meetings and such. I forget is Mount t a metro school? The ASMT is very active in improving services. Here's a link to our state dept of ed http://www.tennessee.gov/education/ Also, there are several things you can do. If you feel they have been abusive in *any* way toward your child, call to complain the follow up by writing a letter of complaint to DSC. We've been told DSC won't investigate anything that isn't in writing. http://www.tennessee.gov/youth/cps/index.htm The link below is to file an administrative complaint, scroll to the bottom of the page & you'll see a link for the complaint form. http://www.tennessee.gov/education/speced/selegalservices.php This agency is supposed to provide free legal assistance. If they give you the run around, email me back http://www.dlactn.org/content.asp?contentID=10 HTH, Debi > > > > Cristy, I too live in TN, East TN to be more exact. I know the > > struggles you talk about. I have to tell you though, please at > least > > file grievances. I know it's hard to fight and spend so much time > > doing it when your first priority HAS to be your child. At the same > > time, we HAVE to stand up for our kids or they will keep doing > this to > > everyone. I'd be happy to forward names/addresses/emails/phone nos > of > > how to do it in this state if you like. Also, the autism solution > > center in Cordova has begun a class action complaint against the > > entire state. THey need everyone who's been denied FAPE/LRE to > join. > > > > Honestly, I stay positive through my faith. Jesus said we need to > > focus on today because today has enough problems of its own, > tomorrow > > will come with its own set. Now this doesn't mean we shouldn't > plan or > > strategize for our kids & what they need. For me, it's taking that > > anxiety, fear, and panic and praying to The Lord that He will care > for > > it all, and for His guidance. I'm not perfect & I sure don't > always do > > this, but that is for what I strive. Also researching and praying > over > > what treatments we should try. > > > > I also a tendancy to compulsively overeat. A dear friend is a > > recovered alcoholic, been clean for 15 years. She's a substance > abuse > > counselor and has shared some of the 12 steps to me, so I bought a > > book from Overeaters Anonymous. The 12 steps echo what The Bible > says > > about taking it one day, one second a time if necessary. It also > talks > > about daily accountability, looking back over our day and seeing > where > > we did well and where we fell short, asking for forgiveness and > > allowing Him to take our guilt away. These have all helped me > learn to > > slow down, focus on doing the best for today, and not being so > anxious > > about the future. > > > > I can also tell you that Allie is doing much better 4 years later, > > because I have got her some of the services/biomedical she's > needed. > > When I feel really down, I look over notes of how far we've come. > > > > HTH, > > Debi > > > Quote
Guest guest Posted March 26, 2006 Report Posted March 26, 2006 > > And it seems like > she doesn't want you to know what she can do. I keep wondering why. Actually, it makes sense. When you KNOW she can do something, you expect her to do it, right? So if she acts like she can't, or you think she can't, she ends up having less she has to do...all kids are inherently lazy, and will try to get by on the least amount of work possible, lol. > I've tried praise, rewards, and such but it never works for long, > then she's no longer interested and screams if you try to make her > in any way. That, and wanting to do things over an over, mostly > wanting to watch certain parts of videos, or computer games,over and > over are our biggest problems. You have to find what motivates her, and use that to get her to do what she needs to do. She wants to watch the same 10 seconds of a movie over and over? Fine, but first she has to do what it is you want her to do. Use what SHE wants, not what you think a kid might want. They will almost never be the same thing! I have had some clients who were motivated by the oddest things, but you have to go with what works. HTH, Amnesty Quote
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