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Old 03-07-2007, 05:58 PM   #91
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Re: parents of autistic children

We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own I have NO family or IRL friends here and they all live in PA which a ways away from CA.

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Old 03-08-2007, 07:35 PM   #92
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Re: parents of autistic children

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Originally Posted by my2babyboys View Post
We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own I have NO family or IRL friends here and they all live in PA which a ways away from CA.
im so very sorry
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Old 03-16-2007, 06:07 PM   #93
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Re: parents of autistic children

Hello Heather,
I saw your post, which I don't usually read threads...so it's interesting that I ran into it!
I just read a great article in this months Discover magazine about new breakthroughs in studying autism and suspected causes. I am a special education teacher and have worked with a number of little ones with autism, now I work with home schooling parents with students with learning challenges, many are autistic, and with good consistent interventions these guys are showing great improvements!!! Check out that article, it was really interesting! And DEMAND only the best services and interventions. Studies show, the younger caught, the better the outcomes. And enjoy the quirks...they truly are the most UNIQUE kids!

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Old 05-08-2007, 09:57 AM   #94
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Re: parents of autistic children

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Originally Posted by my2babyboys View Post
We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own I have NO family or IRL friends here and they all live in PA which a ways away from CA.
Im quoting myself just so if anyone wonders why Im putting this here.

My son had his appointment with the DDS yesterday. They ruled out Autism! They said the majority of his delays are because of his major speech delays. He just referred to him as having a major speech delay with characteristic developmental delays.
He said he has a big number of "signs" that are characteristic of Autism but that he is too advanced in other areas ( I guess that most Autistic children lack ) and he will send me a final report with an indepth explination on the whole meeting. We were there for 2 hours with 2 toddlers and it was very loud so I dont remember everything.
He is going to put him in a program that does OT and speech therapy together for 4 days a week and he will continue his therapy at the school he goes to. He believes the minimal amount ( 1 hr 45 minutes ) of therapy he gets each week is not enough for his severe delays. Only the 45 minute class is by himself and the other doesnt focus enough on him to really help him much.
So once he starts that class, he will have OT/ST 4 times a week, ST at school 2 times a week and come June 6th, my youngest starts speech therapy. I have no clue right now how I am going to make all those appointments, give Matthew his 3 hour nap in the afternoon and afford the almost $3 1/2 dollars a gallon of gas over here but Ill need to make it work.
The most important thing is Oscar gets the help he needs and hopefully the interventions will help him overcome his obsticles and it wont be a life long problem for him. The doc said he wont be able to give me an idea on that till he is about 7. They also changed his medication for his slow moving bowels and hopefully he will be able go more than once a week.
He is such a strong, funny wonderful child and I only ask God that he will stay that way, delays or not
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Old 05-08-2007, 10:19 PM   #95
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Re: parents of autistic children

Quote:
Originally Posted by my2babyboys View Post
Im quoting myself just so if anyone wonders why Im putting this here.

My son had his appointment with the DDS yesterday. They ruled out Autism! They said the majority of his delays are because of his major speech delays. He just referred to him as having a major speech delay with characteristic developmental delays.
He said he has a big number of "signs" that are characteristic of Autism but that he is too advanced in other areas ( I guess that most Autistic children lack ) and he will send me a final report with an indepth explination on the whole meeting. We were there for 2 hours with 2 toddlers and it was very loud so I dont remember everything.
He is going to put him in a program that does OT and speech therapy together for 4 days a week and he will continue his therapy at the school he goes to. He believes the minimal amount ( 1 hr 45 minutes ) of therapy he gets each week is not enough for his severe delays. Only the 45 minute class is by himself and the other doesnt focus enough on him to really help him much.
So once he starts that class, he will have OT/ST 4 times a week, ST at school 2 times a week and come June 6th, my youngest starts speech therapy. I have no clue right now how I am going to make all those appointments, give Matthew his 3 hour nap in the afternoon and afford the almost $3 1/2 dollars a gallon of gas over here but Ill need to make it work.
The most important thing is Oscar gets the help he needs and hopefully the interventions will help him overcome his obsticles and it wont be a life long problem for him. The doc said he wont be able to give me an idea on that till he is about 7. They also changed his medication for his slow moving bowels and hopefully he will be able go more than once a week.
He is such a strong, funny wonderful child and I only ask God that he will stay that way, delays or not
I am SO UNBELIEVABLY HAPPY for your family! what a relief! I'm over here, because I know the struggle your ds and the rest of the fam won't have to go through. Yay! Hoping his therapies go super- awesome-rad!... and good for you for being so on top of it!!
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Old 05-09-2007, 08:35 PM   #96
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Re: parents of autistic children

Hi, I just found this thread while tryng to decide where to post these questions. My oldest dd (5yo) has just recently been diagnosed with Aspergers Syndrome. She has had a rough life already with kidney surgeries and then being diagnosed as hearing impaired (which she is not....she wore hearing aids for 2 years for NO reason!!!!!! Turns out it was because of the AS.)

Our insurance is not wanting to pay for services, but sent us to a Child Psychiatrist this week. He wanted to put her on Ridelin(spelling). I refused, because I have seen what that can do to kids....but now I am wondering, are other AS kids on Ridelin? Is it normal?

Also, we had a rough evening tonight while my younger dd was in dance class. Other kids Madilyn's age are starting to realize that she is different. And some of them are down right mean!!! Tonight, one of the other little boys told her she couldn't play with them, because she is stupid!!!! I was so mad....and then the boys mom said nothing and I know she heard!!!! So then the other kids started teasing her also. This went on for about 5 minutes (seemed like an eternity). She is a brilliant child (can already read and write) and her speech has come a long way, but she is still very lacking in social skills. How do you handle it when other kids tease your kids? It also has just started bothering her...she got very upset tonight and we ended having to go wait in the car, because she started into a fit. But, I would really like to see how some other mom's handle it. I don't want her to have to live her life in a bubble away from other kids, but I also can't watch her have her heart broken. Please help! Thanks for letting me vent!
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Old 05-09-2007, 08:55 PM   #97
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Re: parents of autistic children

I'm sorry mama. It was so hard when kids first started noticing that Kearnan was different. It is just getting to the point where it bothers him when other kids shun him, though alot of times he doesn't understand what they are saying. Kids really are mean, even really young ones.

In my opinion you aren't going to find ridellin helpful. I don't think you will be finding the psychiatrist helpful unless she is depressed or having other emotional issues in conjunction with her ASD. Some children with ASD's do need medicated, but many do not, and I think the vast majority who are are given the meds in error to make them easier for the schools or parents to control. You need a developmental pediatrician. Can your regular pedi refer you? We have a hard time getting things covered as well. You have to do it all just right. Some insurances cover better with an autism diagnosis, others won't cover "developmental delays" . Is she in school? You should be able to get her some services through the school district, some are better than others though. Look up Individuals with Dissabilities education act (IDEA) and Free Appropriate Public Education (FAPE). That will get you started anyway. Kearnan has PDD NOS which is a bit further down the spectrum than Aspergers, but he is on no psyciatric medication nor does he see a psychiatrist. He does see alot of therapists though, and he really needs a behavioral therapist but it isn't covered by insurance. Alot of states now have laws requiring insurance companies to provide therapy coverage for autistic children, and more states are trying to legislate them. Now that doesn't mean that your state does, or that it will cover all of the therapies you might want or need, but it is something to look into.

ASD is a really tough journey and a tough diagnosis to handle on your own. Check in to some local support groups as they may also have ideas on how to get your daughter the services she needs.
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Old 05-09-2007, 09:27 PM   #98
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Re: parents of autistic children

I am making an appointment with our ped again tomorrow to see what else I can do. We are military and tricare (our insurance) told me that they don't cover Autism spectrum disorders. That's why they sent us to this child psychiatrist. I truly don't believe she needs meds. She is hard to control some times, but I would rather deal with it than give her unnecessary meds. She is a very happy energetic child and I don't want her to become numb to everything.

She is in special ed preschool at a public school and receives ST, OT, and play therapy at school. They are going to try to get her into a social skills therapy group next year. The school said most of the kids in the group were older and more impaired, so they are going to try to get another group going next year with some of her peers. The school has been really good, but they don't have anyother AS kids, however they do have 2 Austistic children in the older grades. Madilyn will be starting Kindegarten in the fall in a regular ed classroom with pullouts for her therapy. Our pediatrician even told us that we live in one the worst areas for special needs children education. That makes me so sad. We will be here another 2 years, and I really hope they are able to help her and not just let her slip into the cracks, like at the beginning of this year in Pre-K. Her regular ed Pre-K teachers just kept telling me she was a horrible discipline problem and couldn't be controlled. I have always known that something wasn't quite right, but the doctors we had just kept telling me it was all related to the hearing loss (that they misdiagnosed!). That is what led me to talk in more detail with the speech therapist she has this year (she is great)... She started the ball rolling in getting Madilyn tested. But she will not be back next year.... So I hope we are not back to square one.

Also, if you have children younger than your ASD children, how do you explain that to them? My 3 yo DD is already complaining that Madilyn gets special rules in games (this avoids her meltdowns). Just curious...

I am so glad I found this....it really helps knowing that I am not alone. I have not been able to find any support groups in our area. Thanks mamas!
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Old 05-14-2007, 07:35 AM   #99
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Re: parents of autistic children

mama I am so sorry to hear that, it borke my heart. We have never had anything like this come up yet with Riley and he is going to be 6. I think that he won't notice or care , he takes NO interest in other kids at all. Even his own brother! Sounds like you are doing all the right things for her and are very sensitive to her needs and that is so important. Riley has autism and he does see a psych. (spelling) and he takes Risperedol(an antipsycotic med) but he has severe self injurious behaviors and possibly Bi-polar as well. Each child is different, but you would know if Ritalin isn't right for her fairly quickly by her behavior. I have had to fight my insurance company to pay for therapies...write letters ever day and appeal them as well as call non-stop and complain. Also, do you have any state insurance you could get her on because of her dissability? We live in MASS. and we have Mass Health as a supplimental insurance for Riley becasue he is disabled. They pick up co- pays and perscriptions which is very helpful when you have a child with such high needs. Good luck,and you are NOT alone!!!


p.s. I wanted to add that I have not explained anything to my 2 year old yet as I don't think he understands yet, but I have wondered often about this too. He will surely get mad that his brother gets special treatment. I would like to hear from other mamas how they handle that too!
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Old 05-15-2007, 02:58 PM   #100
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Re: parents of autistic children

I just wanted to say Hi. i never posted here(always spending all my money in the aio's!!) I have an 11 yr old hfa son.
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