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Below are the 15 most recent journal entries recorded in Parents with Autistic children's LiveJournal:

Tuesday, January 19th, 2010
4:59 pm
Navigating some tricky territory in autism diagnosis - Article link, and request
Part 1 of a new article -- called "Navigating some tricky territory in autism diagnosis" -- is up.  Thought it might be useful to some here in the early stages of the diagnostic process.  (If anyone feels they have/are a good personal example for the the upcoming sections, please write to me!  I like to illustrate my information with actual experiences, as it helps others to understand and in some cases really absorb the issues.)
Wednesday, May 20th, 2009
3:25 pm
It's just the autism....
Yesterday I had an annual review of my son's IEP. I met at the school with his teacher, an evaluator (who has been observing him since last year), the school psychologist, the school social worker, and a district representative. Orion, my son, goes to a "regular" elementary school but is in a class with a total of 4 kids (the class is actually a 12:1:1 class for children with emotional and behavioral "problems" but there are only 4 kids in the district assigned to this one).

Anyway, his teacher and I both sat there and explained to everyone what we see behavioraly and academicaly. We both see the same things, though his behavior isn't as severe at home as it is in school.

The evaluator was the one who brought to our attention that my son might be on the spectrum and it was an evaluation by a psychiatrist outiside of the school that gave us an official diagnosis last year.

It seemed like everything that I brought up she just dismissed as being "part of autism" or "part of the spectrum". That's not what I wanted. I know which of his behaviors is part of the spectrum, part of the ADHD, and part of the bipolar (yes, my son has 3 diagnosis). What I wanted were ideas on how to teach him to cope/function/whatever.

*sigh* I hate it when someone says that part of Orion's behavior is "just part of the specturm" or "just poart of being ADHD" or "just part of being bipolar" etc

I don't look at my son's behaviors as being good or bad or comming from this diagnosis or that. I find them to be a part of him, regardless of where they come from. I want to teach him to overcome his obstacles and to strengthen the areas in his life that he is good at.

I bought a book recently called "When the labels don't fit" and the more I read it the more excited I become. It's just what I'm looking for. At least so far, I'm only on the first chapter.

Does anyone else feel this frustrated when someone says "it's just part of ___________" and these "experts" don't bother to tell you how to help? To me it feels dismissive and like they don't want to try and improve the situation.

Oh, and yes, I would feel this way if he weren't autistic/ADHD/bipolar. I don't care about the labels. I just care about helping my son to become an independent and good person.

*sigh* Sorry for the bit of a rant there.
Monday, October 20th, 2008
9:02 pm
I have an IEP question............
Thursday is my son's IEP and I am trying to put together what I want but how do I make the school and DVR listen? All I want is a devise that does text to speech,a transition plan that WILL help ye son and accommodation's in his class NOT modifications. A chance to actually help him in the real world not just the bs of well he can stay here till he is 21 and he is only 17. Um no sorry just because his IQ is at 70 and he has PDD and ADHD. Doesn't mean that he can't have what it takes to make his goal of having a family and holding down a full time job. Why is the school making things so damn hard? He is not a school bound kid but he has a job and pretty much can do most other things fine. He just has trouble with reading and math. My question is What can I do to make the school see this?
Tuesday, June 10th, 2008
5:35 pm
149 Pieces.

149Pieces is a small non-profit organization put together to help support Autism Awareness. It will focus on creating and donating art, music, photography and anything else that may come our way. In the near future, concerts will be held and merchandise will be sold. All the money we recieve or any donations will go to AutismSpeaks.org

We really have big plans & high hopes for this, so until our website gets put up, please head over to myspace & send a friend request and ask how you can get involved! Please spread the word too! We'd really appreciate it!
Tuesday, May 27th, 2008
1:29 pm
Just wanted to introduce myself, hoping to meet friends and other parents who know what I am going through. I am a mother of 4, my son Steve, suffers autism, and we hope daily for a cure. I have 2 daughters, and a younger son also. I enjoy a good laugh every once in a while. So message me if you want. Also if you have any questions regarding autism I would love to help, we have lived with autism for 4 years now.
Monday, May 26th, 2008
5:53 pm
Milk addict
 Any of you guys have a child on the spectrum who's also a milk addict? My almost-3-year-old son is OBSESSED and ADDICTED to milk, it's driving me nuts!! I've been trying to reduce him to 2-3 cups a day with diluted juice in between. Then he finally started signing milk again so I asked his autism specialist teacher what I should do if he asks for milk at times he shouldn't have milk. She said to give him  little by little, otherwise he will STOP signing milk. So I tried that, and he just kept asking for more and more because I was only giving him 1/4 cup of milk each time he asked for it. His dad said maybe if we give him a full cup, he will stop asking for another 2-3 hours.. we tried that, and our son was still acting like a MONSTER whether we told him "later" or tried to give him juice instead. Because of this, he is a MONSTER and has been soiling his diapers ALL DAY, ALL NIGHT. Our son truly truly truly BEGS and NEEDLES us for milk all the time. WIC and his doctor said only to give him 2-3 cups of milk a day, period. The teacher said to keep giving little by little. NOTHING IS WORKING.

Should we just flat-out BAN milk? I am tired of my son needling me all the time, I am tired of constantly buying milk all the time. What do we do?? Please help before I pull out all my hair! (heh)
Monday, April 7th, 2008
7:08 pm
If you're in San Francisco...A new Tribe has been born

Ok...so your kiddo got the diagnosis...
and you cried or got angry or got determined...
disagreements & fights with Ins providers
disagreements & fights with SFUSD
did your friends understand?

Do you find yourself explaining and defining "Autism" or "Stimming" over and over again...

at least 1 out of every 150 kids is on the spectrum...right?

SURELY there are other parents out there that need to be with people who not only understand, but who don't require an explanation when your kiddo grinds his/her teeth or makes sounds that are out of the ordinary...

My experience is that while my friends really try to understand that my son is autistic...they dont have the day to day experience to put it aside and relate to me and my son...(tho they now recognize the signs of Autism when they see it...so they dont just think "crazy" or "bad parents" now they think..."potential stim?")

Anyway...long story short...Any Autistic parents up for an attempt at communication over coffee (or better yet a game night) and potential loud-sounds, stims?? :)

It cant be just me....

Current Mood: determined
Monday, March 24th, 2008
6:53 pm
Kieriana's eyes
A year ago Kieriana was diagnosed with Pervasive Developmental Disorder. A form of autism. I look at her now and I can see how far she's come in just one year.

A year ago she used to spend most of her time lost in her own little world. Her eyes were usually vacant. Rarely did she look at you and when she did it was fleeting. She would run in patterns around the house. Pull out her hair to eat it. Couldn't use a fork or spoon and would only eat while standing up. Usually off of my plate. She would spend hours on a task. Usually running around in patterns or putting as many crayons as she could into her fist. She treated everyone the same, stranger or not. She didn't speak, except to repeat one word over and over. As soon as she learned a new word to repeat she would stop using the previous one completely. When we were out she had to run from one boundary to the next. If there was no boundary she would just keep running. As a result we only went to parks that werer fenced in and seldom went to the beach. She would bang her head into things so hard that she had a permanent bruise on her forehead.

She had just turned 2 when she was diagnosed. It broke my heart, even though I knew she had some form of autism for at least 6 months before then. Three days after she was diagnosed I broke down and cried for her. I wondered if she would ever find love when she grew up. If she would have friends. If she would ever come out of her shell. I was so afraid for her. I was overwhelmed and heartbroken.

Now, just one year later, so much has changed. I owe it all to the intense therapy she's recieved since May. The school. The therapists. All of it.

She plays now. She loves to play with dolls especially. She'll have them walk around and talking (though she'll still babble...sometimes she uses real words). She'll lay them down on her bed, cover them with a blanket, then say "shhhh...sleeping" She likes tea parties too. She follows simple commands (ie. "Bring me your shoes."). She asks questions, though only a few of them. Like "Where it go?" or "What's that?" She doesn't hold conversations yet but the speach therapist said give it another 6 months and she might.

She now treats people differently. She still has no fear of strangers but she doesn't treat them the same way she treats me. She has imagination. She draws and laughs and makes faces. She imitates what people say and do. She'll react to the things she sees on TV. She's curious about her environment. She feeds herself and will eat while sitting at the table. She talks quite a bit though she still has trouble with labeling. (ie. a bed is "sleep" and a cow is "moo". But most things she gets right). She even stopped banging her head for the most part and doesn't pull out her hair anymore.

The biggest difference, however, is her eyes. They're so alert. So curious. It's as if she's really seeing what's around her. Her personality shines through them. My little girl, who I had thought once was lost, is there. In those eyes. I can't fully describe the difference. But it's there and it's unmistakable.

My little girl has come so far that I no longer worry about her. She's improved so drastically that even her therapists are impressed. Amazed even. I know she's going to be OK.
Wednesday, March 5th, 2008
10:33 am

I am the Mommy of a three year old little beautiful angel who has been Dxed with Autism we live in Mi.

Current Mood: accomplished
Monday, March 3rd, 2008
9:33 pm
Question for toddler mamas/daddies
My oldest son will be 3 in June and still throws his "hard" toys such as toy cars, legos, blocks... you get the idea. The problem is, I have a 6-month-old son. My oldest doesn't understand that his little brother will get hurt if he keeps on throwing "hard" toys all over the place. I took away all of his "hard" toys, leaving him with many soft toys which are mostly his little brother's. I hate taking things away from my oldest. I wish he could play with age-appopriate toys without being so aggressive. What kind of toys do you let your toddler play with, without worrying about someone else getting hurt or something getting damaged?  
Tuesday, January 15th, 2008
10:47 pm
my oldest son is 2 1/2 and i find it very difficult to potty-train him. he is so full-of-energy that i can't get him to sit down for more than a minute. i also don't think he understands the concept of sitting on the toilet to pee or poop. 

i wonder, is it harder to potty-train autisitic kids? how long did it take you to train yours? also, HOW did you go about teaching him/her?

thanks in advance! :)

(x-posted to several other communities)
Saturday, January 5th, 2008
7:52 pm
potty training
I think my daughter is ready for potty training. Yesterday she pulled my mom into the bedroomm, pointed at the diapers, and laid down on the floor. A clear sign that she wanted to be changed. She's also been pulling at her diaper when she's wet or sticking her hand down the back to show me poop when she wants to be changed.

For a few months now I've been bringing her into the bathroom with me when I go and telling her that Mommy is going potty. I've taught her the sign for potty too. When I change her diaper I ask if she went potty in her diaper. She will usually smile and make the sign as a response.

Three times today I brought her into the bathroom and sat her down on the training potty I have. She loved it. Sat with her diaper off and her pants pulled around her ankles. She just sat there, happy as can be. She even made the sign for potty a few times while sitting there. She didn't go but hey, it's a step!

With my son when he reached this point I let him run around the house naked and brought him into the bathroom when he was starting to go. With my daughter I don't want her running around naked (for privacy reasons. My son is overly infactuated with the fact that she doesn't have a penis). I'm thinking maybe using undies? But she'll probably go through a lot of them in a day which would mean constant washing. I don't mind the extra laundry if it'll mean she'll get potty trained.

My question is this. Would a child on the spectrum grasp as easily the concept of the potty? With my son it only took a few days. My daughter has PDD and doesn't seem to understand that things have consequences. I don't know if she would grasp yet that pee and poo go in the potty. I can only try.

What are some of your experiences with potty training a child on the spectrum?

BTW...I think I'm going to give the undie thing a go. I'm planning on going to the store and buying a bunch tomorrow. I'm just curious as to other people's experiences so I have back up plans.
Wednesday, November 21st, 2007
6:32 pm
Potty training
How do you potty train a child on the spectrum?

My daughter is 2 1/2 and I would like to begin potty training. She has PDD and her vocabulary is very limited (mostly she signs but even that is limited). I've been bringing her into the bathroom with me and have tried to introduce the potty to her but she seems almost afraid of it.

My son was easy. He saw me go and wanted to do it too. After a few months of him going here and there I finally let him run around the house naked. After a week of that he was fully potty trained. It meant some messes but after the first few he realized he had no choice but to use the potty. Somehow I don't think the same will work for my daughter.

I'm trying to teach her the word and the sign for "potty" with little success. Every time I change her diaper I tell her if she did pee or poo. But she doesn't seem even the slightest bit interested.

I'm wondering what some of you have done?
Wednesday, March 21st, 2007
6:20 pm
Just found out
I found out earlier today that my daughter has PDDNOS. I still feel a little numb. I knew that she had some form of autism but I wasn't sure which. Back in September I started wondering about it. Then, in January, I recieved authorization from my insurance to have her tested. The testing was today (because they like to make parents fret for 3 months. lol). When the doctor told me the diagnosis I just sat there, nodding. I felt like I expected it. I knew. And now, while I'm a bit numb, I'm also relieved. I'm numb because it hasn't quite hit me yet.

I hope that I can do what needs to be done for her. Between my bipolar, my son's ADHD and now my daughter's PDDNOS...I feel like I have a lot on my plate. Add to that my husband leaving for Iraq in a week and a half and it's really overwhelming. But, I've done well so far (and this isn't the first time he's left). I figure...what's one more thing to work on? lol I've already been working with her in ways I could think of as is, even without the diagnosis. The doctor said I've been doing a pretty good job. So, I guess I'll just continue with that and add to it the behavioral therapy, occupational therapy, and speech therapies that the doctor recommended.

Anyways, thanks for listening/reading. :)
Friday, November 24th, 2006
9:29 am
Hi, I know this community is still small but I figured maybe one of you can help me.

My daughter is 20 months. She started out as a textbook baby (how her doctor described her). But lately she's been...well...changing. It started off slow but this past week it's been more extreme. *sigh* I hope it's all in my head. I'm calling the doctor on Monday because it's reached a boiling point.

At her last doctor's appointment the ped said that we may want to get her screened for autism. That's the only reason it's in my head. He said she doesn't seem to be very autistic but that we should rule it out. At the time her behavior was still a bit "normal" with the exception of her not trying to communicate and a few other things (this was 2 weeks ago). So I really didn't think much of it.

In just two short weeks she's become a different baby it seems, behavior wise. And the more I think about it the more I'm noticing things.

The biggest thing is the fits she'll throw. They only just started and they go way beyond normal toddler tantrums. I've even asked my mother and a few friends what they think and they agree with me. These fits or tantrums will sometimes last as long as half an hour (timed it once). They started about a week and a half ago. She'll just start screaming (no tears which I thought odd) and thrashing about. Sometimes she'll hurt herself by pulling her hair, banging her head on something (floor, couch, me, etc), hitting herself and scratching herself. She'll thrash about in such a way that I'm afraid she'll really hurt herself. Holding her rarely helps and usually makes it worse. I've tried everything I can think of to calm her (giving her juice or milk, food, checking her diaper, holding her, singing to her, cooing, trying to distract her with a toy or movie, etc).

Eventually she just snaps out of it. Like someone turned off a swtich. Then she'll be very...well...she'll just stare off into space. Sometimes she'll want to be held and sometimes she just wants to be left alone.

Another thing is that she doesn't smile or laugh as much as she used to. She was a very happy baby but lately she seems almost depressed at times. Just sitting there with this sad or contrary look on her face. I'm worried because she just doesn't seem happy anymore. It actually pains me to see her like this. Sometimes she'll just lay on the couch or floor and not do anything where before she was very active and running everywhere. I keep on checking her for a fever to make sure she's not sick or something.

She also doesn't even try to communicate. A few months ago she did start saying "Mama" and "baby" but has stopped that. She'll sometimes say "Hi" if someone says it first but doesn't just say it. She won't call me "Mama" or my husband "Dada" or anything. They say at 20 months she should know a handful of words that she uses on a regular basis. I would be happy if it was just one or two. She also doesn't use any body language. No pointing at things or trying to get my attention when she wants something (other than the fits which my Mom said might be her way of letting me know she wants something but not being able to tell me what). If she's thirsty, for example, she doesn't let me know by handing me her sippy cup or pulling me to the fridge the way my son did. She'll just cry.

When she plays it's a bit odd. For example she'll take crayons and stuff them in her tiny fist or line them up. Sometimes she'll scribble on the floor with them (she hates paper which drives me nuts). Mostly shen she plays with toys she just lines them up or will shake them. No pretend play at all that I can tell.

She ignores other children, even those her own size. Though she does love adults. Even still, she doesn't want to play with people. When it comes to play she'll get angry at you if you try to play with her. Only interraction she likes is cuddling (the one thing that makes me think she might not be autistic is her love of being held but only when she wants it) and peek a boo. Try anything else and she'll hit you, scream at you, or walk away.

She's also peculiar when she eats. I can only give her the tiniest amount at a time and only one thing at a time. If I give her, for example, some potatoes and some chicken she'll freak out. But if I just give her one or two pieces of chicken at a time and then do the same with the potatoes she's fine and happy.

There are a few things that make me think she's not autistic. As I said above she loves to be held. Maybe it's because I had her in a sling a lot as an infant. She'll just climb in my lap sometimes when she's in her "staring out into space mode" and lay there. Sometimes becomming dead weight though she's wide awake.

She also will smile and laugh even though it's not as much as she used to. Oh, and she does babble. Usually the same sounds over and over. But even that has decreased.

She will look me in the eye. Though sometimes she wont (even to the point of facing me but looking up so she only sees me out of the corner of her eye). More often than not though she'll look right at me.

*sigh* I hope I'm just over-reacting. I hope it's just a developmental thing that will correct itself as time goes on. I hope that maybe she's just very emotional and that's why she has the tantrums. I hope a lot of things. But, I need to be sure so I'm calling the doctor on Monday to talk with him about it.

Thanks for reading and any advice you have to give.

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