Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi Everyone, It's in the middle of the night here in Australia but couldn't sleep. Since was given the dx as PPD-NOS her speach therapist who is also the co-ordinator of the early intervention she is attending is giving off signals that she dissagree's with that. The paediatricain who we are seeing specialises in the feild of autism and disorders related as such. This was unknown to me when we intially saw her(dr) but she has only been nothing but covering all bases before giving her a dx. EEG to four different blood tests, recomending early intervention since it was obvious she was delayed in more than one area. My dilemma is it was a shock to have autism suggested when we first visited her, we even visited her again shortly afterward because of wanting to know why she suspected autism. When l say autism in 's case it is being on the spectrum. To then come to terms with this and then have a some other proffesional disagree and make you fell in limbo again is horrible. only has few autistic traits which l am lucky compared to most of you Mums or adults with dx's. Yet it seems to be very frustrating in 's situation as l can see l am going to have to argue the point accross to whom ever is disputing it. As you all know if you had a choice we wouldn't choose our children to have any disorder. But because 's isn't as clear as some it is going to be a constant battle. I read this site every day, it is my therapy to hear and talk to Mums in similiar and harder situations. I thank my lucky stars that only has few autistic ways but almost wish that it is more obvious so people would be more helpful than seemingly making things harder. I only wish they knew or lived the hardships we have had since was born. My Mother who has brought up 4 children and helped mind 6 grandchildren has said she has never in all her years come across a child like ( with all the problems we had) Sorry about this being drawn out as l had to just get this of my cheast. Even one lady from our group said she didn't find PPD-NOS to be autism in her eyes but l was still welcome to talk to the group. In books and understood by proffesionals in the field PPD-NOS is an autistic spectrum disorder being because the children have some amount of autistic behaviour problems too. Well that is how it is in Australia anyhow, sorry again about the long note, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Sorry I know you were regretting going to the doctor. I always do too. PDD-NOS which in my opi9nion is mild autism and aspergers well no one notices these things. I am having the same problem with MIchelle. Remember the problems I meantioned with and her school? Well they insisted she has no autism and laughed at me for thinking that way. They said her problem is strictly behavior and what is happening at home? PDD-NOS is also ignored in circumstances here especially when private insurance has to pay for something. I am sorry about what the other parent made you feel. Some of these parents think they know it all and are very very judgemental. For example with well a blind man can see his autism but this one woman who has a 7 year old autistic son had the nerve to doubt my sons autism. Her son talks well just cant hold a conversation with him!!! this woman is causing me alot of problems at the school too due to also being a counselor for the state! Did I tell you I was kicked out of the doctors office yesterday? I asked them to give me an appointment during school hours and they refused. they said new patients have to have appointments after 4pm. My appointment was at 4:15. started pushing chairs around thus making the receptionist nervous so she went out there to see what he was doing and he pushed her in the hip. He is 5 years old. She told him off good and he ignored her as usual. She then started tellingme off. I said I am so sorry but he has autism. She said I dont care. He hit me! I then said i tried to make an appointment during school hours and the office here wouldnt let me. She then said you need to control your son!! I said how long til I get seen? She said it will be a while. I said then maybe I best reschedule. She didnt offer to reschedule me either. Then she said you have a good day Maam. I said sarcastically you too! I then went home and thought about it more and got more upset. I called them back and said loose my paperwork. I dont want identity theft and I do not want a record there. I never want to be seen there again. She then said well your son hit me! I got so upset when she said that I called her a prejudish bit++ I am so thankful doesnt do that. She sits down and stares off in space. was aweful on the airplane though LOL Sometimes you will find out that some parents that have autistic parents think if there child doesnt fit your childs mold then your childis not autistic. They think they know it all in all aspects of life. Some kind be right arrogant. Charlene -- Feeling sad Hi Everyone, It's in the middle of the night here in Australia but couldn't sleep. Since was given the dx as PPD-NOS her speach therapist who is also the co-ordinator of the early intervention she is attending is giving off signals that she dissagree's with that. The paediatricain who we are seeing specialises in the feild of autism and disorders related as such. This was unknown to me when we intially saw her(dr) but she has only been nothing but covering all bases before giving her a dx. EEG to four different blood tests, recomending early intervention since it was obvious she was delayed in more than one area. My dilemma is it was a shock to have autism suggested when we first visited her, we even visited her again shortly afterward because of wanting to know why she suspected autism. When l say autism in 's case it is being on the spectrum. To then come to terms with this and then have a some other proffesional disagree and make you fell in limbo again is horrible. only has few autistic traits which l am lucky compared to most of you Mums or adults with dx's. Yet it seems to be very frustrating in 's situation as l can see l am going to have to argue the point accross to whom ever is disputing it. As you all know if you had a choice we wouldn't choose our children to have any disorder. But because 's isn't as clear as some it is going to be a constant battle. I read this site every day, it is my therapy to hear and talk to Mums in similiar and harder situations. I thank my lucky stars that only has few autistic ways but almost wish that it is more obvious so people would be more helpful than seemingly making things harder. I only wish they knew or lived the hardships we have had since was born. My Mother who has brought up 4 children and helped mind 6 grandchildren has said she has never in all her years come across a child like ( with all the problems we had) Sorry about this being drawn out as l had to just get this of my cheast. Even one lady from our group said she didn't find PPD-NOS to be autism in her eyes but l was still welcome to talk to the group. In books and understood by proffesionals in the field PPD-NOS is an autistic spectrum disorder being because the children have some amount of autistic behaviour problems too. Well that is how it is in Australia anyhow, sorry again about the long note, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 ((( ))) We have had several people doubt my dd's dx also.. its very frustrating but after much research I know what her dx is so I just blow off the nay sayers. Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi tanya.....well here I am at 3.18am..............middle of the night for me too. There is always so much to think about isn’t there, may as well sit here, then lay in bed I say. You know you have friends, hang in there. Cheryl s Feeling sad Hi Everyone, It's in the middle of the night here in Australia but couldn't sleep. Since was given the dx as PPD-NOS her speach therapist who is also the co-ordinator of the early intervention she is attending is giving off signals that she dissagree's with that. The paediatricain who we are seeing specialises in the feild of autism and disorders related as such. This was unknown to me when we intially saw her(dr) but she has only been nothing but covering all bases before giving her a dx. EEG to four different blood tests, recomending early intervention since it was obvious she was delayed in more than one area. My dilemma is it was a shock to have autism suggested when we first visited her, we even visited her again shortly afterward because of wanting to know why she suspected autism. When l say autism in 's case it is being on the spectrum. To then come to terms with this and then have a some other proffesional disagree and make you fell in limbo again is horrible. only has few autistic traits which l am lucky compared to most of you Mums or adults with dx's. Yet it seems to be very frustrating in 's situation as l can see l am going to have to argue the point accross to whom ever is disputing it. As you all know if you had a choice we wouldn't choose our children to have any disorder. But because 's isn't as clear as some it is going to be a constant battle. I read this site every day, it is my therapy to hear and talk to Mums in similiar and harder situations. I thank my lucky stars that only has few autistic ways but almost wish that it is more obvious so people would be more helpful than seemingly making things harder. I only wish they knew or lived the hardships we have had since was born. My Mother who has brought up 4 children and helped mind 6 grandchildren has said she has never in all her years come across a child like ( with all the problems we had) Sorry about this being drawn out as l had to just get this of my cheast. Even one lady from our group said she didn't find PPD-NOS to be autism in her eyes but l was still welcome to talk to the group. In books and understood by proffesionals in the field PPD-NOS is an autistic spectrum disorder being because the children have some amount of autistic behaviour problems too. Well that is how it is in Australia anyhow, sorry again about the long note, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi , I am also from Australia and have a girl Bianca 4 who was diagnosed only last week at the RCH melb. I walked in knowing they would say she was " officially " autistic..but in the back of my mind I hoped that they wouldnt give her a diagnosis of PDD-NOS (only because the services etc are not as good if not diagnosed as autistic). Theres something wrong with that isnt there. What state are you in? Warm wishes. Annette Feeling sad Hi Everyone, It's in the middle of the night here in Australia but couldn't sleep. Since was given the dx as PPD-NOS her speach therapist who is also the co-ordinator of the early intervention she is attending is giving off signals that she dissagree's with that. The paediatricain who we are seeing specialises in the feild of autism and disorders related as such. This was unknown to me when we intially saw her(dr) but she has only been nothing but covering all bases before giving her a dx. EEG to four different blood tests, recomending early intervention since it was obvious she was delayed in more than one area. My dilemma is it was a shock to have autism suggested when we first visited her, we even visited her again shortly afterward because of wanting to know why she suspected autism. When l say autism in 's case it is being on the spectrum. To then come to terms with this and then have a some other proffesional disagree and make you fell in limbo again is horrible. only has few autistic traits which l am lucky compared to most of you Mums or adults with dx's. Yet it seems to be very frustrating in 's situation as l can see l am going to have to argue the point accross to whom ever is disputing it. As you all know if you had a choice we wouldn't choose our children to have any disorder. But because 's isn't as clear as some it is going to be a constant battle. I read this site every day, it is my therapy to hear and talk to Mums in similiar and harder situations. I thank my lucky stars that only has few autistic ways but almost wish that it is more obvious so people would be more helpful than seemingly making things harder. I only wish they knew or lived the hardships we have had since was born. My Mother who has brought up 4 children and helped mind 6 grandchildren has said she has never in all her years come across a child like ( with all the problems we had) Sorry about this being drawn out as l had to just get this of my cheast. Even one lady from our group said she didn't find PPD-NOS to be autism in her eyes but l was still welcome to talk to the group. In books and understood by proffesionals in the field PPD-NOS is an autistic spectrum disorder being because the children have some amount of autistic behaviour problems too. Well that is how it is in Australia anyhow, sorry again about the long note, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 ..... she doesn't have any. Neither do any of the other boobs you run into. DONELLE THAT IS A STATEMENT THAT MADE ME LAUGH VERY HARD ROFL Your dr. is the specialist. Some doctors are specialist while others you wonder how they found there license. realize that they were wrong. I took my dd to 5 psychologists before she got her dx (one said she was OCD, one said she had anxiety disorder, two said, yep she's different but we don't know why, and finally the 5th said autism - which has been seconded by a 6th psy chologist). So, even among the medical - and I use that term lightly- community, there will be disagreements. Sounds like you have been through the ringer too Donnelle Charlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 , I'm thinking your daughter is 20 months, please forgive me if I'm wrong. If this is the case, then it's highly likely your daughter's condition is still defining itself within her body. When Allie was 20 month she was considered mildly autistic. Her psychologist said he would almost classify it as PDD-NOS. Then after we began the diet she improved so much we felt she might not even be considered autistic for some time. Then she spiraled downward around 32 months. At 36 months she was tested for her special ed school and they said the consider her severely autistic. Now she's back to mild/moderate again. My point is that at different ages, growth spurts, developmental spurts, etc they seem to move up and down the spectrum. My advice to you is to try to take it one day at a time. When Allie was first dx I would hang my daily emotional state on Allie's behavior. If her eye contact was bad or she made little sound, I found myself crying and feeling so anxious. Each round of testing brought me a week's worth of crying, because it never turned out as positively as I hoped. At that point I was afraid to even hope for her future because I didn't know what kind of future she would have. She was nonverbal and had no receptive language skills. As time went on with therapy and diet she began to speak and improve. Then she regressed again. I found myself spiralling emotionally with her bad days. We got that straight with some mild med. Then her bad testing at school. But I noticed I only cried about 3 days as compared to a week's worth. I realized that I also was beginning to not pay quite so much attention at every single little thing she did. I think it helped both her and my older daughter, not to mention myself. Also, one year later on her third birthday, I found myself beginning to dream for her once again. I could look back and see the enormous progress she made from age 2 to age 3(we got her dx 2 weeks before her second birthday). While she still had a long way to go, just getting her to there was huge. Since her birthday she has continued to progress. My point is that you are in for somewhat of a roller coaster ride over the next months and years. Let it come. Realize that some days you will feel so depressed and exhausted. It's okay to feel sad and depressed. It will get better if you just hang in there. Those first progressions can seem that it will take forever, but your little one will progress. You are getting her help and you will see the benefits, but it might take some time. Debi > Hi Everyone, > It's in the middle of the night here in Australia but couldn't sleep. > Since was given the dx as PPD-NOS her speach therapist who is > also the co-ordinator of the early intervention she is attending is > giving off signals that she dissagree's with that. The paediatricain > who we are seeing specialises in the feild of autism and disorders > related as such. This was unknown to me when we intially saw her (dr) > but she has only been nothing but covering all bases before giving > her a dx. EEG to four different blood tests, recomending early > intervention since it was obvious she was delayed in more than one > area. > My dilemma is it was a shock to have autism suggested when we first > visited her, we even visited her again shortly afterward because of > wanting to know why she suspected autism. When l say autism in > 's case it is being on the spectrum. To then come to terms with > this and then have a some other proffesional disagree and make you > fell in limbo again is horrible. > only has few autistic traits which l am lucky compared to most > of you Mums or adults with dx's. Yet it seems to be very frustrating > in 's situation as l can see l am going to have to argue the > point accross to whom ever is disputing it. As you all know if you > had a choice we wouldn't choose our children to have any disorder. > But because 's isn't as clear as some it is going to be a > constant battle. > I read this site every day, it is my therapy to hear and talk to Mums > in similiar and harder situations. I thank my lucky stars that > only has few autistic ways but almost wish that it is more obvious so > people would be more helpful than seemingly making things harder. I > only wish they knew or lived the hardships we have had since > was born. My Mother who has brought up 4 children and helped mind 6 > grandchildren has said she has never in all her years come across a > child like ( with all the problems we had) > Sorry about this being drawn out as l had to just get this of my > cheast. Even one lady from our group said she didn't find PPD-NOS to > be autism in her eyes but l was still welcome to talk to the group. > In books and understood by proffesionals in the field PPD-NOS is an > autistic spectrum disorder being because the children have some > amount of autistic behaviour problems too. Well that is how it is in > Australia anyhow, sorry again about the long note, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Debbi, I to be to fully agree to this cycling of growths and regressions in people of autism and this cycling is life long. I to be to have times of functioning that ismuch good but then without warning will cycle into states of regressions. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 From Melbourne too, live in the eastern suberbs. will be able to go to a centre called Irabina that specialises with any child on the spectrum which is great but she won't be able to get in till next yr. > Hi , I am also from Australia and have a girl Bianca 4 who was diagnosed only last week at the RCH melb. I walked in knowing they would say she was " officially " autistic..but in the back of my mind I hoped that they wouldnt give her a diagnosis of PDD-NOS (only because the services etc are not as good if not diagnosed as autistic). Theres something wrong with that isnt there. What state are you in? Warm wishes. Annette > > Feeling sad > > > Hi Everyone, > It's in the middle of the night here in Australia but couldn't sleep. > Since was given the dx as PPD-NOS her speach therapist who is > also the co-ordinator of the early intervention she is attending is > giving off signals that she dissagree's with that. The paediatricain > who we are seeing specialises in the feild of autism and disorders > related as such. This was unknown to me when we intially saw her (dr) > but she has only been nothing but covering all bases before giving > her a dx. EEG to four different blood tests, recomending early > intervention since it was obvious she was delayed in more than one > area. > My dilemma is it was a shock to have autism suggested when we first > visited her, we even visited her again shortly afterward because of > wanting to know why she suspected autism. When l say autism in > 's case it is being on the spectrum. To then come to terms with > this and then have a some other proffesional disagree and make you > fell in limbo again is horrible. > only has few autistic traits which l am lucky compared to most > of you Mums or adults with dx's. Yet it seems to be very frustrating > in 's situation as l can see l am going to have to argue the > point accross to whom ever is disputing it. As you all know if you > had a choice we wouldn't choose our children to have any disorder. > But because 's isn't as clear as some it is going to be a > constant battle. > I read this site every day, it is my therapy to hear and talk to Mums > in similiar and harder situations. I thank my lucky stars that > only has few autistic ways but almost wish that it is more obvious so > people would be more helpful than seemingly making things harder. I > only wish they knew or lived the hardships we have had since > was born. My Mother who has brought up 4 children and helped mind 6 > grandchildren has said she has never in all her years come across a > child like ( with all the problems we had) > Sorry about this being drawn out as l had to just get this of my > cheast. Even one lady from our group said she didn't find PPD-NOS to > be autism in her eyes but l was still welcome to talk to the group. > In books and understood by proffesionals in the field PPD-NOS is an > autistic spectrum disorder being because the children have some > amount of autistic behaviour problems too. Well that is how it is in > Australia anyhow, sorry again about the long note, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Thankyou for the encouragement Debi, is 2yr 2mths old, and l think it does scare me alot what the future holds. I would of never guessed that was going to have autistic traits at 2yrs old, now that l am aware of what they are through researching into autism. As Donelle said in a e-mail to me, l think l am going through the grieving process, shock, anger then sadness. I think it is just really dawned apon me how l will have to fight for every bit of help can get. When l say fight l guess l mean the opposition l will get off other proffesionals, therapists and conflicting information. You really do need to be strong to get the full benefit of services for your child, have to learn to speak out. That's a hard thing to do when you are a reserved person. I know what you mean with how symptons can change with growth spurts and other things. I am noticing this too since it was suggested that she was on the autistic spectrum at 22 mths. I guess l'll just have to hold on for the life of me with this continuing roller coaster ride,LOL -- In Autism_in_Girls , " fightingautism " <fightingautism@y...> wrote: > , I'm thinking your daughter is 20 months, please forgive me if > I'm wrong. If this is the case, then it's highly likely your > daughter's condition is still defining itself within her body. > > When Allie was 20 month she was considered mildly autistic. Her > psychologist said he would almost classify it as PDD-NOS. Then after > we began the diet she improved so much we felt she might not even be > considered autistic for some time. Then she spiraled downward around > 32 months. At 36 months she was tested for her special ed school and > they said the consider her severely autistic. Now she's back to > mild/moderate again. My point is that at different ages, growth > spurts, developmental spurts, etc they seem to move up and down the > spectrum. > > My advice to you is to try to take it one day at a time. When Allie > was first dx I would hang my daily emotional state on Allie's > behavior. If her eye contact was bad or she made little sound, I > found myself crying and feeling so anxious. Each round of testing > brought me a week's worth of crying, because it never turned out as > positively as I hoped. At that point I was afraid to even hope for > her future because I didn't know what kind of future she would have. > She was nonverbal and had no receptive language skills. > > As time went on with therapy and diet she began to speak and improve. > Then she regressed again. I found myself spiralling emotionally with > her bad days. We got that straight with some mild med. Then her bad > testing at school. But I noticed I only cried about 3 days as > compared to a week's worth. I realized that I also was beginning to > not pay quite so much attention at every single little thing she did. > I think it helped both her and my older daughter, not to mention > myself. > > Also, one year later on her third birthday, I found myself beginning > to dream for her once again. I could look back and see the enormous > progress she made from age 2 to age 3(we got her dx 2 weeks before > her second birthday). While she still had a long way to go, just > getting her to there was huge. Since her birthday she has continued > to progress. > > My point is that you are in for somewhat of a roller coaster ride > over the next months and years. Let it come. Realize that some days > you will feel so depressed and exhausted. It's okay to feel sad and > depressed. It will get better if you just hang in there. Those first > progressions can seem that it will take forever, but your little one > will progress. You are getting her help and you will see the > benefits, but it might take some time. > > Debi > > > > > Hi Everyone, > > It's in the middle of the night here in Australia but couldn't > sleep. > > Since was given the dx as PPD-NOS her speach therapist who is > > also the co-ordinator of the early intervention she is attending is > > giving off signals that she dissagree's with that. The > paediatricain > > who we are seeing specialises in the feild of autism and disorders > > related as such. This was unknown to me when we intially saw her > (dr) > > but she has only been nothing but covering all bases before giving > > her a dx. EEG to four different blood tests, recomending early > > intervention since it was obvious she was delayed in more than one > > area. > > My dilemma is it was a shock to have autism suggested when we first > > visited her, we even visited her again shortly afterward because of > > wanting to know why she suspected autism. When l say autism in > > 's case it is being on the spectrum. To then come to terms > with > > this and then have a some other proffesional disagree and make you > > fell in limbo again is horrible. > > only has few autistic traits which l am lucky compared to > most > > of you Mums or adults with dx's. Yet it seems to be very > frustrating > > in 's situation as l can see l am going to have to argue the > > point accross to whom ever is disputing it. As you all know if you > > had a choice we wouldn't choose our children to have any disorder. > > But because 's isn't as clear as some it is going to be a > > constant battle. > > I read this site every day, it is my therapy to hear and talk to > Mums > > in similiar and harder situations. I thank my lucky stars that > > > only has few autistic ways but almost wish that it is more obvious > so > > people would be more helpful than seemingly making things harder. I > > only wish they knew or lived the hardships we have had since > > was born. My Mother who has brought up 4 children and helped mind 6 > > grandchildren has said she has never in all her years come across a > > child like ( with all the problems we had) > > Sorry about this being drawn out as l had to just get this of my > > cheast. Even one lady from our group said she didn't find PPD-NOS > to > > be autism in her eyes but l was still welcome to talk to the group. > > In books and understood by proffesionals in the field PPD-NOS is an > > autistic spectrum disorder being because the children have some > > amount of autistic behaviour problems too. Well that is how it is > in > > Australia anyhow, sorry again about the long note, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Thats it I need to move now!!!! I need to move to Australia LOL Charlene -- Re: Feeling sad From Melbourne too, live in the eastern suberbs. will be able to go to a centre called Irabina that specialises with any child on the spectrum which is great but she won't be able to get in till next yr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Thats it I need to move now!!!! I need to move to Australia LOL Charlene -- Re: Feeling sad From Melbourne too, live in the eastern suberbs. will be able to go to a centre called Irabina that specialises with any child on the spectrum which is great but she won't be able to get in till next yr. Quote Link to comment Share on other sites More sharing options...
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