Hello, I'm a mom with a 5 year old daughter who is autistic

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Hello,
I am fascinated with all that I have read on this site so far. My daughter was "diagnosed" (never formally) when she was 2.5. She has been in school since then and we have done that therapy that we can afford (that's another topic altogether). I am now on a mission to learn more about autistic people from their point of view. I have grown frustrated with doctors and therapists who really don't know. My daughter and her peers are all completely different and it fascinates me how we can best make these kids happy, not necessarily make them fit into our mold of normal. My daughter has reached the point where she is extremely frustrated with her inability to communicate and my heart is breaking. I thought if I could get some insight from someone who actually knows what it is like I might be able to help her find the best way to communicate, be it verbally or other.
Thanks for listening to me go on!
Michelle

my son is a 5 yo aspie as well you didnt define what type of autism she has, but try teching her sign language, helps to make eye contact and read body language, which despite teaching her the signing skills is important to her to read body language and express which is something all aspies should do.

Congragulations!


Teach her to type.
Pictures.
Art.
Drums!

That was quick! Hi! Well, I don't really know what kind of autism she has as no one seems to know anything about anything! I am considering taking her to a DAN doctor in the next few weeks for an evaluation. She is non-verbal with the exception of a few words that she will use inconsistently with prompts. Occasionally, she will have days where she will say things on her own (one word requests). She has made observations verbally a few times "It's raining!" Her speach is very unclear and she has difficulty with with hard consonant sounds. She sings to herself and "talks" in her own language all day long. She does have interests but does not like to "do" things such as put pegs in holes, play with toys (unless they make noise). She loves music but only wants to hear it play. I guess what I am trying to say is that she doesn't like doing anything interactive.
She loves attention when it's one on one. She has a twin brother and a baby sister and she could really care less about them. I do make them play games together now and then that I know she will like (ring around the rosy). I am trying to figure out how she ticks so I can help her. My biggest concern right now is how to get her to tell me when she is sick. She cried for 2 hours in such a sad and painful manner. When I tried to ask her to show me what was wrong she just pushed me out and said "away!". When I took her to the dr. she had a burst eardrum from and ear infection I had no signs to detect. I hate that!!
Her eye contact with me and her speech therapist is pretty much "normal". She avoids pretty much everyone else unless she likes them.
When she was a baby she used a few signs but since 2.5 she won't do any. She really doesn't like to use her hands to do anything she "has" to do i.e. something we want her to do but she could care less about. I have been wanting to take a sign language class and learn it correctly so I can use it properly. I only have about 10 "words" of sign language.
Interestingly, she will do what she is told if I make it clear I mean it. She usually whines the whole time but she will do it.
Recently, we have come to consider that she may be dyspraxic as she seems to have a lot of trouble forming words and picking them out of a sentence.
OK, I'm done going on again -Thanks for listening!

Seabright, thanks for the suggestions however, she doesn't like to color, paint, hold a writing utensil, she doesn't even want to play the paino and make the music she loves so much. She loves to eat (which I have to keep her from doing 24/7) and jumping on a trampoline-oh and water-baths, running my bathroom sink to overflowing etc.
Any suggestions on how to get her to sit down and get into fine motor activities would be great!

I don't know about getting her to sit and do fine motor things.

This would be maybe where you are pushing her do something that she doesn't want to do, without her having a clear understanding of WHY. Seriously (from her point of view) WHY. Does she REALLY REALLY need to do those things now? Can you provide some examples?

She might still be forming an idea of what they are about.

And she still IS a baby.

The fact that you are so proactive about showing this kind of care is a stellar thumbs up!! ! I think she will have a great life despite her troubles.

Also think of all the wonderful things that surround her involving her natural perpensity(is that even a word, geez...) to do kinetic things. Trampoline-MAJOR HEALTH; with long term results on the biosystem. Water-MAJOR THERAPY-with long term results on the psyki. You may just have a lifeguard on your hands.

or an athlete.
or a zoologist.
sure the nitpiky fine motor stuff is important. how hard that is for people learning their gross skills first isn't really explainable. Let her have her speed first, and introduce other stimuli in small increments, if neccessary. Remember-she's only 2.5. Let her have at least until 4 before.....


Your a great mom. I can tell.
Thank you for thanking me too--that was very nice, and I do mean well.

Best of luck!! !!

This is also how I raised my son. He now has strait A's B's. Learns language. Has friends. Is happy. I just tried to get in his head and see things from his perspective-and talked to him alot!! and asked HIM alot of questions. and watched his non verbals. and built on what I saw-so his experience was the best it could be.

SeaBright you sound like a great mom! You might be on to something with the letting her get up to speed but not in the way you meant. I realized that I wasn't very clear in my initial post that my daughter is 5 now. However, when she WAS 2.5 she hated her therapy and cried and screamed when they tried to get her to play. I realize now that they were forcing her to do things she didn't want to do without trying to find out what she did enjoy doing and going from there.
This is what I try to do now at home using her favorite things as rewards. I do have another 5 year old and a 17 month old so giving her all of the attention she needs and keeping her from going off on her own all of the time is frustratingly impossible.
She did just say "apple juice" rather clearly when I asked her to say it rather than lead my hand to it (I did prompt it first for her). She also showed interest in helping me make lunch and voluntarily did all of the steps and made mac and cheese-she's never done that of her own interest before.
I apologize for not being clear about her age, I didn't mean to!
Michelle

With the communication, have you tried PECS or Makaton signing? I find these ones quite useful with some of the children I work with.

oh!

Hey,
while playing around on my computer I found the text to speech option.

maybe a fun game would be for you to show her you typing words and the computer reads them back. Just to perk her interest.

Eye to key to meaning of alphabet onto language, ect.

They say video gaming trains the brains response time to stimuli.

Anyways. There was this program of an autistic woman. Her voice was terrible and it always seemed like she was agitated and screaming. LIked spoons under running water-to cope and leg go. But when she texted into her text to speech machine-to communicate-she sounded like a scientist. Her logic was that good. Her understanding of the world that complete. Myself, I can only use text to communicate clearly. Sure I speak fine. My vocab is great. But when and why and that give and take in a conversation is definately beyond me. Theroy of other minds=absent. Never had it. Never will. Must. Find. Alternatives.



you could also make your text to speech program read off what is on the web.

Gem, I have tried PECS but I found that they were too restrictive. I needed 5000 of them to just to communicate the daily stuff. That and she would not even try to say the word if she had the PEC. I have considered using one for the bathroom and one for sick as those are the only things she will not come and lead me to/about. I have never heard of the signing you mentioned. How does that work?

SeaBright, I tried (a little) to find the text to speech option but I couldn't-can you guide me a bit? Next, and pardon my ignorance here, but you wrote "Theory of other minds-absent" It seems that you are perfectly able to engage in this conversation with me so I wonder what makes it different "live" if you will? Can you offer any insight? I am extremely interested in exactly what it is that makes it difficult face to face? I suppose perhaps I am asking more for what you think and feel in a person to person exchange as you are displaying give and take in our postings here. Please excuse my boldness for asking I just really am driven to understand my child so I can help her better and help those in our family understand it better.

Michelle

Welcome to WP!

Tim

"its cool" Michelle. I'll see if I can think up an explaination. First-you engaged the conversation. I just jumped on board and responded to a call out; knowing my voice added to all other voices may give you enough data. Face to face, you'd probably have some physical reaction, that left me feeling untrustworthy of you-and therefore INCAPIPLE of anything meaningful. It's not controlable-it just is. As you are no one. You have to ask, therefore the commucication is already damaged. You've alienated me by making an attempt to not alienate me. When you figure it out I'll take a copy of the book you write
Anyways-family!

I'm not sure wher the text message thing is. Somewhere in windows xp start menu. Accessories: accecibility: narrarator.

In other words Michelle, and frankly, whereas you asked a specific question ie"where is (can you direct me to) the narrator program on my computer please"

you asked an unspecific question "what is the communication gap"

sure, I can show you where the program is.

the other one-I'm not sure what you are saying.

Maybe some others can lend their tune and through more of the question asking process you'll be able to define your question enough for another to define your answer. Its that difficult. And if I knew you or your daughter I would have some background or context. Right now, when you mention specifics about your daughter, having personal information of myself, some animal training savant skill, and some hands on with my own, I can take a guess at some things to try and save your kiddo some major trauma-but that's it!

The rest is between me and my counselor.

Good night.

Sure. Now here is how the conversation went for me:
Mom: I have a kid with autism
SeaBright: Holy crap! Not another suffering baby...must...save...her.
Mom: She plays in water and doesn't talk much, I am not sure she will be ready for her college dissertation-I can't get her to compose anything yet.
SeaBright: Lay off the kid. She is learning her other lifesaving skills.
Mom: ok thanks!
SeaBright: If mom would just listen to what the little daughter is saying...



Mom: I am too lazy to look around for the program you mentioned-will you do that footwork for me ((I know you have nothing better to do and come on here just for me)) thanks!
SeaBright: (bites lip),,,suuuurrrrre. (grumble)





Mom: Tell me how it all works.
SeaBright: HOLLLLY SH*T. Are you F*CKING KIDDING ME.


Is this how YOU percieved the conversation? If so, than we share a theory of other minds. If not than as you can see, the answer is far more complex than the question.

If you are really driven to understand your child you have only to look within the heart of your child* It's as simple as that.

I am not qualified to answer your question, but I think that science will come up with something soon. stay tuned and good luck!! !!

This message was not meant to offend-but you did ask.

Getting lots of peoples imput and then pulling the best of the information from that pile of information....I don't know how to tell another person how to do that either. It's instinctual. Like when a neurotypical says to a collegue, my alice, what wonderful shoes, while really meaning, god those suck, you have no fashion sense. I would only hear what wonderful shoes, though I may wonder what your trying get at, being as I can tell you don't like me in general, as someone who likes me would tell me, god girl those are ugly, and someone who didn't like me certainly would be up to something to be walking up to me and commenting on my shoes.

I don't understand where NeuroTypicals don't understand the needs and developments of thier children-can you explain that to me?

Lemmie know when you figure out the barrier!

I slept on it, and woke up with it, and it sat at the edges of my consciousness, being the topic of my dreaming.

(Sometimes I manage to hold down a job, and single parent, and go to school, and deal a quarter century of daily misunderstandings*(insert documentary here), While having AS- and managing a stress reliever-sometimes this involves multitasking )

I took a week off for Landsickness, having spent the last year and a half floating my 9-7 or 9. (boat work).

I knew I had gotten defensive. I knew why in the abstract. Having 'why' solid enough to explain to another who does not intuitively already know, I knew, would take some time, and time, after the stimuli was removed. Housemates and family members rarely have this option, I speculate, unless they cover the topic in advance.

The easy out: "I dunno"
The actual answer: is outside my scope
The partial answer: You are not standing in front of me in a cyclical conversation. We are having a linear conversation. Whearas most (just spewing no real information here!) neurotypicals think in a linearly and speak thier/those thoughts fluently; I think fluently, and speak about what I think, not at all vocally. I may insert other *sh*t, but not at all what I am thinking, not what comprises my thoughts.

These questions you have asked, may be exactly what would naturally fall from your vocals in a conversation..

Wheras my answers, would not. Or rather, I would stumble trying to get a large amount of information to process itself into words, under a certain degree of stress, and they would come out as something, like.....because Your Stupid. You Don't Care. You Dont THINK. You Dont Listen. The real answer probably lies somewhere in the realm of the Literary Poetic definition of 'Hearing'-which I don't have on hand and have learned so long ago for it to be pointless to explain. And I'm not looking it up.

The divide is that NTs are unable to HEAR AS's/Auties in face to face conversations. And AS's/Auties don't know the LANGUAGE of the NT, or they'd be speaking it I assure you!

Think of the Arabic taxi cab analogy, if you will. If the guy tried hard enough and had enough training he would could lose that accent and speak like a British Attacche to the Amazon if he so chose. Or could he?

Your right, that made no sense
And remember! We're learning you too.

So.. I was a bit miffed when you directed speciffically "SeaBright" all of those big questions. As much as why in a room of 8000 only 3 converse. As if each question had a glove and a boxer attached to it. Why-PUNCH. Why-PUNCH. (remember the old batman graphics POW! WHACK! THUMP!-each with it's obvious full screen light shatter) And of course, I'd rather be hit, pysically, than mentally-which is why I am drawn to martial arts.
And the thought crossed my mind that I should not have posted in the first place, as if I didn't, that wouldn't have happened.

For a minute it gets me away from everybody's mental blows and focuses on something more concrete and simple-karate that is.

I think deep and fluent and precise. I live simply. I speak plainly. In my off pc life I tend to ask why to people who don't know how to say "I dunno, but maybe so and so does".
Because they put all the stupid people in the first contact position-that's why. Cept with Aspergers. My Counselor says, you bet I know, alot about it and still learning, lets ride this train together. Of course it takes keeping the center open, and getting down there, and facing it. Find someone like that in you real off pc life.

So I dunno. What was the question? Whatever it was, reverse it, I have the same question. It would make a great thread, once all the hurt feelings that inevitably come along with it, sift to the bottom, or float to the top, depending.

And I guaruntee your daughter is having a harder time at it blow for blow than you are.

You go girl ! ! (SeaBright, that is ! !!)