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III
04-03-2008, 05:56 PM
Spread the awareness and share the support. This is the thread for it. Share your stories, resources, or just give a hug.

http://ecx.images-amazon.com/images/I/41DG0KE25PL._AA280_.jpg

dolores haze
04-03-2008, 06:02 PM
Division TEACHH, University of North Carolina, Chapel Hill is one of the most widely respected research and treatment programs. The website has lots of great information, links, and curriculum materials.

http://www.teacch.com/welcome.html

Cranky
04-03-2008, 06:35 PM
Trey, you're the awesomest!

OK. In hopes that either 1) This will help someone else recognize the signs or 2) Help people understand people like my son a little bit better, I'll share my Trey's* story.

*Trey=not his real name, he's my third born.


Trey was born in June, 2004. Right away, he announced his presence by constant screaming. He was not a happy baby unless he was swaddled tightly and carried. Constantly. I laid him down to go to the bathroom, and that's about it. When I needed a shower, hubby would take over. We ran our vacuum cleaner all night, every night, just so we could get sleep. I don't think he was making very good eye contact at that point, but it's really impossible to say for sure, as my memories are very blurred from that time.

At around 6 months, this abruptly stopped, like someone flipped a switch. He suddenly became very calm. He began to sit up and crawl rather awkwardly. Sort of an army crawl, with one leg dragging behind. When he rolled over, he did it sort of stiffly, like a log. But he was calm, and seemed happy. I remember telling my husband that there was something "different" about Trey, but I couldn't put my finger on it. He agreed. But things rolled along. He didn't babble or coo, and rarely smiled. He was a very serious child, but he loved music. That would get his attention in a second! He would also play peek-a-boo, using his blanket, but always in a ritualized way.

He walked on time, just shy of his first birthday. He had a bout of roseola (a form of measles you don't vaccinate against, lovely, ain't it?) at around the same time. His youngest brother was born, and time marched on. But Trey seemed to march in place. He still had no words, and showed no recognition of his name. He seemed deaf, and clung to what seemed to us to be weird things. He wanted to carry two objects in his hands at all times; sometimes crayons, sometimes spoons. Right around fifteen months of age, I remember saying to my mother the word "autism" for the first time. But I rationalized it away, and so did everyone else. Including the doctor. He would "catch up". He was regressing (! he never gained skills, so I didn't understand this) because of our move and the birth of his brother.

By this time, he had very few words, all used in a rote fashion. "1,2,3, GO!", Mama, and Dada. That was it. He was obsessed with Star Wars, especially with the movie credits. He slept horribly, often waking at 11pm and staying up until 6 am. He was aggressive to his younger brother, who was now a year old and bewildered by his big brother's behavior. At 24 months, Trey lost his few words, and I went into a panic mode. I started doing research while he marched in circles in my living room, clacking two spoons at chest height and giggling for no reason. He screamed when we went to the grocery store...sometimes even as soon as we pulled into the parking lot. We know now it was the crowds, the lights, and the echoing there that bothered him. He was fascinated by ceiling fans.

I took two online tests: the MCHAT (http://www.dbpeds.org/articles/detail.cfm?TextID=466), waiting a month in between as directed. He "failed". Then, I took the Childbrain Assessment (http://www.childbrain.com/pddassess.html). This one is something I still use to track Trey's progress, as it's not really for use by laypersons, but it gives you an idea of the behaviors associated with Autism Spectrum Disorders. He scored in the severe range.

So, I trucked off to the doctor with these results in hand, and walked out with a referral to a neuropsychologist. In May of 2007, Trey was diagnosed with Autistic Disorder, one month shy of his third birthday. I wish I had known about Early Intervention (http://www.wrightslaw.com/info/ei.index.htm)...I could have gotten Trey speech therapy services much sooner.

As it stands now, Trey will be four in June. He still has no language. But he's on medication now that helps him sleep at night (and therefore all of us!), and reduced his aggressive tendencies to nil. He's a very happy, affectionate child, and he's learning some self-help skills. He seems to be of average intelligence, but he can't really show what he knows yet. The future is uncertain for him, but that's true of all children.

He's happy, he's loved, and that's the important thing.

I hope that someone found the information here useful.

dolores haze
04-03-2008, 07:09 PM
I highly recommend this book to educators, caregivers, and family members of individuals with learning difficulties and behavioral challenges.

http://www.amazon.com/Progress-Without-Punishment-Effective-Approaches/dp/0807729116

It can be a little too technical at times, but once you are familiar with the terminology everything falls into place. I've used the techniques in this book both professionally and personally, and have used it many times to train people on how to work compassionately and effectively with individuals with autism.

reigningcatsndogs
04-03-2008, 07:26 PM
:Hug2:

Thanks III for the thread... :kiss:

Sparky -- my youngest -- didn't present before 15 months. At that time, he suffered a pretty bad burn -- (my older son was a climber, so I always put my cup of tea on the back of the stove -- for the first time, Sparky climbed quickly, while I was only ten feet away, and pulled the tea onto himself -- 2nd and 3rd degree burns to 11% of his little body). They had him on major painkillers. I remember the pharmacist and the doctor screaming at each other because the pharmacist was refusing to fill the Rx -- he was sure it would kill our baby. He ended up complying with the doctor's wishes but we didn't know what to do.

After that, he stopped talking. He remained crawling for months - not even attempting to walk. He wouldn't wear clothes, wouldn't eat, never slept. I couldn't leave the house with him, because I just didn't have the strength to deal with two babies at one time. He was diagnosed with ADHD, then with PDD, and finally with autism. Thankfully we were in a place that had incredible services for special kids. We learned that the clothes physically caused him pain, and did occupational therapy to help with that. We learned that florescent lights caused him pain... we learned how to deal with that. We learned about how he would anchor himself with an object when he needed to focus and how he would time himself out when he felt overwhelmed. We learned that he has an incredibly gift for science and biology and ecology, and we used that gift to teach him math, reading, geography, history and even social studies. He's been homeschooled since grade 4.

One of the hardest things to deal with was that he had no internal clock -- he never slept. We had to put metal shutters on the outside of his bedroom window so he wouldn't climb out. At the time, we couldn't get melatonin here -- it was illegal, so while we tried to find a way to get some here, we were told by our team of specialists that we had to lock him in his room at night, with nothing in there, so that we could at least get a few hours of sleep. The first night, I slept on the floor propped up on the outside of his door so I could hear him. It's been a long road since then, but one I wouldn't change for anything. We have learned so much along the way.

More than anything, we learned how precious and pure a soul he is. He gives his love and this time with ghusto, he sees beauty in the smallest and simplest things around him. He gives us perspective, always, and reminds us of what is truly important in the world.

Hugs to all the families of special kids out there :Hug2:.

Sassee
04-03-2008, 07:40 PM
I just read this article the other day. Whether or not anyone agrees with it, it's still pretty interesting. This is on Jenny McCarthy's son -

http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html?iref=mpstoryview

Salem
04-03-2008, 07:48 PM
Anyone see CNN last night? They did a story on an Autistic girl named Amanda. Amanda has no speech, yet she can type. She uses her keyboard to comunicate and is surprisingly witty and articulate and has a great sense of humor. Fascinating!

Sarita
04-03-2008, 07:51 PM
My nephew is autistic. He's almost 7 and wasn't officially diagnosed until he was close to 3. My sister was sure of his diagnosis from around 18 months on.

I'm going to be doing the PSU Autism Speaks race next Saturday on behalf of my sister and Oliver. :) I love that little man. Follow the links in my sig if you want to know more about the race!

Here's a shot of him in his only shirt. Yes, he only wears one shirt. My sister has several of them and does laundry every night... EVERY NIGHT.

http://thumb11.webshots.net/t/58/758/6/12/33/2050612330071216111TntCIP_th.jpg (http://entertainment.webshots.com/photo/2050612330071216111TntCIP)

reigningcatsndogs
04-03-2008, 07:58 PM
My nephew is autistic. He's almost 7 and wasn't officially diagnosed until he was close to 3. My sister was sure of his diagnosis from around 18 months on.

I'm going to be doing the PSU Autism Speaks race next Saturday on behalf of my sister and Oliver. :) I love that little man. Follow the links in my sig if you want to know more about the race!

Here's a shot of him in his only shirt. Yes, he only wears one shirt. My sister has several of them and does laundry every night... EVERY NIGHT.

http://thumb11.webshots.net/t/58/758/6/12/33/2050612330071216111TntCIP_th.jpg (http://entertainment.webshots.com/photo/2050612330071216111TntCIP)

Way to go!! I had to laugh about the shirt -- Sparky's had a big iguana on it, and it was the ONLY one he would wear. I had to mend that thing dozens of times!

Cranky
04-03-2008, 08:00 PM
Trey's like that about his Batman blanket. I have to wash it while he's at school. Poor thing's a tattered rag, but he won't give it up. :D

Sarita
04-03-2008, 08:02 PM
Way to go!! I had to laugh about the shirt -- Sparky's had a big iguana on it, and it was the ONLY one he would wear. I had to mend that thing dozens of times!LOL. My sister had to order PJ's from overseas, because he wore out the only pair he'd wear: A set of red and green dinosaur ones from a department store in the UK from the late 90's. LOL.

Every morning he says, "Ollie, you want red pirate shirt? Okay, mommy. Red pirate shirt." He's made leaps and bounds with speech since starting school, 2 years ago. He just sparkles. He's amazing. And I'm lucky enough to be one of the people he likes. I've recently replaced my husband on the list. Go me! :)

Salem
04-03-2008, 08:03 PM
Cranky, Sara and Cats, thanks for sharing your stories. My son is high-functioning (Aspergers) and it's always interesting to hear stories of other kids in the spectrum. It's amazing how similar all of our stories are! My son did a lot of the same things that you mentioned--the lack of sleep, the obsessive need to have things exactly as they want them, wearing a particular item. My son was obsessed with socks; he freaked out if one of his socks fell off and would yell "uh-oh sock! Uh-oh sock!" until we put his sock back on!

Cranky
04-03-2008, 08:07 PM
Cranky, Sara and Cats, thanks for sharing your stories. My son is high-functioning (Aspergers) and it's always interesting to hear stories of other kids in the spectrum. It's amazing how similar all of our stories are! My son did a lot of the same things that you mentioned--the lack of sleep, the obsessive need to have things exactly as they want them, wearing a particular item. My son was obsessed with socks; he freaked out if one of his socks fell off and would yell "uh-oh sock! Uh-oh sock!" until we put his sock back on!

Thanks for sharing yours, too, Salem, and Saritams. "Uh-oh, sock!" :roll: "Red pirate shirt." Too cute!

My oldest boy is probably Asperger's, and he couldn't be more different than Trey in a lot of ways. He used to obsessively line up his Matchbox cars (he had hundreds of 'em!), but that's about it. He was super-laid back, and a good eater. Still is.

But now, he's obsessed with dinosaurs (has been since age two) and calendars. He's also an excellent artist. Ace is quite the kid. :D

They all are, imo! :D

Haggis
04-03-2008, 08:11 PM
*slips into thread and steals III's sig line, knowing full well he'd approve*

Salem
04-03-2008, 08:13 PM
How do I insert a picture into my sig line?

EDIT: nevermind! I did it!!

reigningcatsndogs
04-03-2008, 08:21 PM
Sparky has a puffalump - a soft stuffy. The first one he lost, and I literally walked around calling the damn thing like it was a pet. FP had stopped making them, so I found a replacement one on ebay. Since then, I have had to replace Puffy three times (its his anchor) and have had to recover his blanket four times. I do a LOT of mending! ;)

The most amazing thing to happen to Sparky was when my parents got him a set of books -- you know those things that come in the mail. They send you a couple of pages each month and then you put them in the binders -- they had an animal book, and at three, Tony knew every word on every page that arrived. He couldn't read yet, but he just remembered everything. Soon he needed a globe and he would point to some stupid small island, name it and list what animals lived there and what the climate was. He ended up with two four-inch binders of animal pages. I had to buy a special back-pack for him to carry them in. He would jump into bed in the morning, dump the books on my head and then sit and recite everything again and again.

I got him a deck of dinosaur playing cards. He went through the deck once, and the second time, we were playing Go Fish, and he would ask for the card by the dinosaur on it, then spew out all the information about the stupid critter... It amazes me every time.

Haggis
04-03-2008, 08:30 PM
My grandson (9) has Aspergers. His mom taught him an old Jerry Lewis routine that my grandson was able to repeat word for word after only hearing the routine a few times.

The routine?

Repeat after me


One hen - (the other person says, "one hen.")


Two ducks - (the other person says, "one hen, two ducks.")

Three squawking geese - (the other person says, "one hen, two ducks, three squawking geese, etc.")


Four limerick oysters

Five corpulent porpoises

Six pair of Don Alverzo's tweezers

Seven thousand Macedonians in full battle array

Eight brass monkeys from the ancient sacred crypts of Egypt

Nine apathetic, sympathetic, diabetic, old men on roller skates with a marked propensity towards procrastination and sloth

Ten lyrical, spherical diabolical denizens of the blue deep who hall stall around the corner of the quo of the quay of the quivery, all at the same time.

dolores haze
04-03-2008, 08:31 PM
Great stories! Thanks for sharing them everyone. I'm working up to sharing my personal story. With my professional hat on , though, a lot of you have been talking about children having difficulty with sensory processing. This wiki article provides a good overview of sensory integration theory.

http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction

It is usually assessed by an Occupational Therapist, but not all of them are very knowledgable about it. One O.T. I worked with would prescibe "a rich sensory diet" with no other guidance. Another highly specialized O.T. I worked with would write up an individualized plan for each individual child or adult. We had great success using her recommendations.

Cranky
04-03-2008, 08:33 PM
Great stories! Thanks for sharing them everyone. I'm working up to sharing my personal story. With my professional hat on , though, a lot of you have been talking about children having difficulty with sensory processing. This wiki article provides a good overview of sensory integration theory.

http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction

It is usually assessed by an Occupational Therapist, but not all of them are very knowledgable about it. One O.T. I worked with would prescibe "a rich sensory diet" with no other guidance. Another highly specialized O.T. I worked with would write up an individualized plan for each individual child or adult. We had great success using her recommendations.

We'll be here when you're ready, dolores. ((HUGS))

As to the OT...we do a little sensory diet thingy at home. It involves coffee grounds, rice, and lots of messes.

It's great fun!

We're also looking into getting an indoor swing, and a trampoline, plus a bunch of other stuff. For now, we make do. At school, we get one OT consult a quarter. Which sorta sucks. I'll be working on that.

Cranky
04-03-2008, 08:34 PM
My grandson (9) has Aspergers. His mom taught him an old Jerry Lewis routine that my grandson was able to repeat word for word after only hearing the routine a few times.

The routine?

Repeat after me


One hen - (the other person says, "one hen.")

Two ducks - (the other person says, "one hen, two ducks.")

Three squawking geese - (the other person says, "one hen, two ducks, three squawking geese, etc.")

Four limerick oysters

Five corpulent porpoises

Six pair of Don Alverzo's tweezers

Seven thousand Macedonians in full battle array

Eight brass monkeys from the ancient sacred crypts of Egypt

Nine apathetic, sympathetic, diabetic, old men on roller skates with a marked propensity towards procrastination and sloth

Ten lyrical, spherical diabolical denizens of the blue deep who hall stall around the corner of the quo of the quay of the quivery, all at the same time.


:roll:

reigningcatsndogs
04-03-2008, 08:45 PM
There was a comedy team in Canada many years ago -- probably not many of you will remember Wayne and Shuster. They did a ton of Shakespeare spoofs (they considered him one of the best on their writing staff) and when I started homeschooling, I thought the best way to approach Shakespeare was to poo-poo all the negative stuff kids say about it before even knowing what its about. They do a spoof of Julius Caesar -- Rinse the Blood from My Toga -- and Sparky can recite every word, knows every character, and often accuses his brother of having a lean and hungry look. The same for the Shakespearean Baseball Game (seriously, if you want to see something incredible, this is IT!). I added a copy of the 'Complete Works of Shakespeare in One Hour' -- a three man comedy troope does it all and its beyond funny, and my kids, especially Sparky, were hooked on Shakespeare. He retains it all.

(BTW -- I've talked to dozens of other homeschoolers who were having trouble getting going on Willy -- one of them called me last week. Her 15 yr old daughter had about a dozen friends in, watching Shakespeare and loving it because of those shows)

Sparky also loves to tell jokes - between you, me and the gatepost, 90% of them suck, but they make him laugh silly, so how can you not like it.

Cranky
04-03-2008, 08:52 PM
That sounds hilarious, Mary. I'm gonna have to see if I can find some of those online or something.

It's too much for my guys yet (well, maybe Ace would like it), but I bet the hubster and I would get a crack out of it! :D

Jenan Mac
04-03-2008, 09:01 PM
My youngest has Asperger's, adhd, and anxiety disorder. She's probably genetically loaded for the Asperger's, judging by members of the families on both sides. Henny's going to be ten in a couple of weeks, and honestly, puberty is more of an issue in this house than Asperger's is, most of the time. On the other hand, puberty wouldn't have been enough reason for me to homeschool next year. Our schools have no clue what to do with her, because she won't fit into a box no matter how hard they push.
My daughter/school story: she's a writer, and has been benefitting from the Uncle Jim thread sort of second-hand. Her classroom teacher this year has been marking her low in writing because she doesn't write like a fourth grader (not enough Tom Swifties, among other things). I showed some of her stuff to an English instructor at FSU and he was astounded-- his words, actually, were "is that teacher on crack?" The kid'll probably publish a novel before I will. ::sigh::

<shameless plug> A couple of years ago Adams Media did one of their "Cup of Comfort" books for parents of children with ASDs. My bit is on p221.

http://www.amazon.com/Cup-Comfort-Parents-Children-Autism/dp/1593376839/ref=sr_1_1?ie=UTF8&s=books&qid=1207241387&sr=8-1

reigningcatsndogs
04-03-2008, 09:03 PM
Love Youtube

Here's the Shakespearean Baseball game

http://www.youtube.com/watch?v=mhQ9aeCE8Oo

Jenan Mac
04-03-2008, 09:12 PM
And thanks for the Shakespeare idea. I have to steal it!

Bravo
04-03-2008, 09:20 PM
i posted this before:

http://www.salon.com/mwt/feature/2008/03/22/ann_bauer/index.html?source=rss&aim=/mwt/feature

it's is a really good essay on a mother dealing with her autistic son.

good stuff.

Jenan Mac
04-03-2008, 09:27 PM
Thanks, Bravo. I kind of liked this article:

http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html

III
04-03-2008, 09:55 PM
*slips into thread and steals III's sig line, knowing full well he'd approve*

I stole it from Cranky in the first place :D. I'm really enjoying everyone's stories. My nephew has Asperger's, but I rarely get to see him since they live in Atlanta. He's such a sweet kid at home, but if my brother or his wife leave him he becomes violent and unfortunately he's a big, brawny kid for a 12-year-old. They have him in a special school which apparently has been helping him make great strides. It's been very hard on their family, though. It's hard enough raising any child and you parents of autistic children are just friggin superheroes in my eyes.

dolores haze
04-03-2008, 09:58 PM
Our fellow writer, Temple Grandin, is a fascinating woman. She writes and lectures about, among other things, her life with autism.

YouTube has quite a few clips on her. Here's one:

http://www.youtube.com/watch?v=46ycu3JFRrA

III
04-03-2008, 10:02 PM
And sooner or later someone's gonna have to mention our own John Robison's book Look Me In The Eye (http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1207245685&sr=1-1).

http://ecx.images-amazon.com/images/I/51qi2f1gfrL._SS500_.jpg

Cranky
04-03-2008, 10:39 PM
I'm posting a short excerpt of a really great essay that I emailed out to family and friends after Trey was diagnosed. Here is a link to the full essay (http://www.southflorida.com/sfparenting/sfe-sfp-autism,0,6196233.story), ETA: written by Ellen Notbom, and there is also a book by the same title.

Ten Things Every Child With Autism Wishes You Knew

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

Cranky
04-03-2008, 11:12 PM
One really big sign I forgot to mention was Trey's obsession with soda cans. He would line them up, over and over again. When he got bored with that, he'd make patterns, and would turn the cans so that the tabs all faced the same direction.

He could also stack blocks like nobody's business!

He's also a fiend for puzzles, and he's quite good at them. He seems to have a real affinity for patterns of all kinds. He was also obsessed with our phone books for the longest time. One of his favorite "toys".

He still isn't much of a toy person.

Jersey Chick
04-03-2008, 11:31 PM
We are still trying to determine if my son, Jason (yes, that's his real name) is autistic. He started babbling a few words late last summer, just before his 2nd birthday. He would say "cat", "Dog" "Go" "Cook" (short for cookie) and "Dada". Then my husband was hospitalized for a month, and we moved, and a lot of other things happened - and Jay stopped speaking those few words. He's never said Mommy. Ever.

We were accepted into the NJ Early Intervention program in February - he has three therapists - a speech therapist, and occupational therapist, and a developmental therapist. He's learned sign language for "more", "please", "help", "thank you" "drink" "eat". He babbles again - but the only clear word is Go. But his therapists are thrilled with his improvement in such a short time. His screaming fits have dropped tremendously and he's a lot like the happy little guy he was a year ago. Fortunately, if he is autistic, it isn't severe. He loves to play and be held and tickled and his laughter is the sweetest sound. He's not locked in his own world - which makes dealing with his problem a little easier.

Hopefully, he'll be speaking soon - but at least we can communicate with him for now. But I still really want to hear him say mommy.

Cranky
04-03-2008, 11:35 PM
We are still trying to determine if my son, Jason (yes, that's his real name) is autistic. He started babbling a few words late last summer, just before his 2nd birthday. He would say "cat", "Dog" "Go" "Cook" (short for cookie) and "Dada". Then my husband was hospitalized for a month, and we moved, and a lot of other things happened - and Jay stopped speaking those few words. He's never said Mommy. Ever.

We were accepted into the NJ Early Intervention program in February - he has three therapists - a speech therapist, and occupational therapist, and a developmental therapist. He's learned sign language for "more", "please", "help", "thank you" "drink" "eat". He babbles again - but the only clear word is Go. But his therapists are thrilled with his improvement in such a short time. His screaming fits have dropped tremendously and he's a lot like the happy little guy he was a year ago. Fortunately, if he is autistic, it isn't severe. He loves to play and be held and tickled and his laughter is the sweetest sound. He's not locked in his own world - which makes dealing with his problem a little easier.

Hopefully, he'll be speaking soon - but at least we can communicate with him for now. But I still really want to hear him say mommy.

Mucho grande hugs to you, Jersey. The waiting is the hardest part, I think. You're a great mom, and he's getting some awesome help already, I'm sure, which is super important.

Cranky
04-03-2008, 11:41 PM
One more clear sign, I should add (geez, there's a ton! LOL):

Lack of joint attention. If I pointed at something, Trey would either ignore me, or stare at my hand. He does not point himself, has never. Still will not follow a point. By way of contrast, my almost three year old was pointing at one year and saying "What dat?".

ETA: I know I'm sort of spewing all over this thread, but I really believe it's important that people recognize these signs as a red flag they should follow up. Sometimes, it's really nothing. But early intervention is very important when someone has autism, so forgive my rattling on.

I wish someone had rattled on to me when Trey was smaller.

reigningcatsndogs
04-03-2008, 11:47 PM
Jersey :Hug2: Sparky was four before he talked, and then only I could understand him. I have a video of one of his earliest speech therapy sessions, and I still sometimes watch it. It's amazing what we take for granted. A simple word makes so much difference. I didn't think I'd ever hear Mommy from him, but I did, and I cried. Now, he talks and talks and talks. He tells terrible jokes and he sings horribly off key and always with the wrong words, and I love every minute of it.

I'm praying for you to hear that word. Let us know when you do so we can all celebrate with you.

III
04-03-2008, 11:58 PM
ETA: I know I'm sort of spewing all over this thread,

Duh, that's what this thread is for. Don't apologize. Spew more wisdom and insight!

dolores haze
04-03-2008, 11:58 PM
Hopefully, he'll be speaking soon - but at least we can communicate with him for now. But I still really want to hear him say mommy.

Have you ever heard him make the "mmm" sound?

A few years ago I was doing early intervention with a kid his age. My main task was to teach him basic sign language and to practice sounds. We worked on the "mmm" sound when I sat him down to eat. (I was also teaching him how to use utensils). I would serve him up a yummy snack, and say "mmm" repeatedly. He got the "mmm" sound down pretty quickly, then we moved on to saying "ma." At that point I turned it over to his mother - I didn't want him to associate the word "mama" with me.

I moved out of the area, so I never got to find out if he ever learned to say "mama." I hope he did. And I hope your son does, too.

Cranky
04-04-2008, 12:11 AM
Thanks, Trey.


Another thing for the pile, then:

Kids (or adults!) with autism aren't cold. They are often very affectionate, loving people. They just don't show it in obvious ways. My son loves kisses, but he's more comfortable giving than receiving. He'll wipe kisses off his cheek, but tolerate a kiss on the head or the lips, and that only with his father and myself. He dislikes light touching, but craves being swung and tickled.

People he doesn't know appear to be ignored, but he's not really ignoring them. It sounds strange, but it's true. For example, if he sees an object in his path, he'll swing right around it. But if it's a person he doesn't know, and they're in his path (he paces a lot), he'll walk right over their feet. It's his way of saying, "I know you're here, but I'm not happy about it."

Obviously, this is something we have to work on, lol!

Jersey Chick
04-04-2008, 12:15 AM
Man, this thread is bringing tears to my cynical Jersey eyes - so much support it isn't even funny.

It was tough to write that post - it isn't something that is supposed to happen to you - it happens to other people's kids. Never stopped to think I'm someone else's other people.

Dolores - he is making the mmmmm sound, so I haven't given up hope. He's come a long way in a few short weeks, so I can't complain.

I don't normally post pictures of my kids - but this is one I can't resist -
http://i209.photobucket.com/albums/bb134/JerseyChick71/139.jpg

That's our Jay-in-the-box. We haven't been able to put the shelves back in this cabinet (or keep the glass clean) because Jay likes to hang out in it.

Thanks again - you have no idea how much this means... :Hug2: back

Cranky
04-04-2008, 12:19 AM
Man, this thread is bringing tears to my cynical Jersey eyes - so much support it isn't even funny.

It was tough to write that post - it isn't something that is supposed to happen to you - it happens to other people's kids. Never stopped to think I'm someone else's other people.

Dolores - he is making the mmmmm sound, so I haven't given up hope. He's come a long way in a few short weeks, so I can't complain.

I don't normally post pictures of my kids - but this is one I can't resist -
http://i209.photobucket.com/albums/bb134/JerseyChick71/139.jpg

That's our Jay-in-the-box. We haven't been able to put the shelves back in this cabinet (or keep the glass clean) because Jay likes to hang out in it.

Thanks again - you have no idea how much this means... :Hug2: back

Oh my gosh, he's just adorable!! :D When my Trey gets up from his nap (he's been sick, like everyone else in the house), I may take a pic and post it here, too.

And I know what you mean about "other people". I still have a hard time understanding how and why this happened (I think genes in our case), and I still sometimes cry about it. It's hard, but rewarding, to be a parent of a special needs kid, I think.

We loves ya, Jersey. Hang in there.

Yeshanu
04-04-2008, 12:19 AM
My grandson (9) has Aspergers. His mom taught him an old Jerry Lewis routine that my grandson was able to repeat word for word after only hearing the routine a few times.




rofl

My daughter taught my youngest something like that a number of years ago. He still thinks it's funny.

What's your name? (Robin)

What's your sister's name? (All-o-sin) (He says it like that...)

What's your brother's name? (David)

What's your mommy's name? (Fruit bat)

What's your daddy's name? (Nut case)

We also play "Got your [name of body part]!"

Me: "Got your toe!" (Reaches out, pulls on toe)

Robin: "Want toe back, please." (He reaches for my hand, puts my hand where his toe should be.)

If I try and put his toe on his head, he'll start squealing, and physically make me put it back where it belongs. :roll:

He's 17 1/2 years old, and he was diagnosed at 2 1/2. I wouldn't trade this kid for anything! He's the middle one in the pic.

http://i64.photobucket.com/albums/h190/Yeshanu/Graduation031.jpg

Yeshanu
04-04-2008, 12:24 AM
Robin seems to be the oldest autistic child we're talking about, so I'll give you some important words to remember:

It does get better. Really, it does.

Robin still won't carry on a conversation unless you start it, and then it's very slow going. But he does talk, he doesn't have the bust-the-house-down tantrums nearly as often, and he is learning to cook and take care of his personal hygiene needs.

As your child grows, you'll also meet angels on the road that you wouldn't have met otherwise, like the teacher or support worker who bonds with your child and helps him learn stuff you never thought he'd learn. Or his older brother or sister, who can calm him and make him laugh when you personally want to punch a hole in the wall.

Here's to angels!

Haggis
04-04-2008, 12:35 AM
Here's to angels!

To angels. :e2drunk:









"Fruit bat" :ROFL:

Yeshanu
04-04-2008, 12:39 AM
"Fruit bat" :ROFL:

Yep. That's me.

Cranky
04-04-2008, 12:39 AM
Yep. That's me.


That was pretty hilarious, I have to say. *snort*

:D

Kida Adelyne
04-04-2008, 12:59 AM
rofl

My daughter taught my youngest something like that a number of years ago. He still thinks it's funny.

What's your name? (Robin)

What's your sister's name? (All-o-sin) (He says it like that...)

What's your brother's name? (David)

What's your mommy's name? (Fruit bat)

What's your daddy's name? (Nut case)

We also play "Got your [name of body part]!"

Me: "Got your toe!" (Reaches out, pulls on toe)

Robin: "Want toe back, please." (He reaches for my hand, puts my hand where his toe should be.)

If I try and put his toe on his head, he'll start squealing, and physically make me put it back where it belongs. :roll:




She forgot he also use to say his name was Squeaky, which was the name of my hamster at the time. He likes to be clever.

He also will chase you around the house if you don't give his toe/finger/nose back. And say 'pretty please with a cherry on top' if I tell him to (much better than my other brother :tongue)

-All-o-sin

Yeshanu
04-04-2008, 01:03 AM
Does your other brother actually talk? :tongue

Jersey Chick
04-04-2008, 01:41 AM
Fruit bat - I like that :D

It's so nice to know not one of us is alone.... group hug!
:e2grouphu

III
04-04-2008, 01:42 AM
Our next-door neighbors have an autistic son who's 13 but looks 7 and acts 3 and he's the sweetest little dude. He'll wander into our house and sit down on the couch and start watching TV with us. It does occasionally freak me out when I think I'm alone in the house and he wanders down from the upstairs playroom, though.
"Bye Mr. Young!"
"John John! How long have you been up there?"
"Oh I don't know. A while."
:)

reigningcatsndogs
04-04-2008, 01:47 AM
Robin seems to be the oldest autistic child we're talking about, so I'll give you some important words to remember:

It does get better. Really, it does.

Robin still won't carry on a conversation unless you start it, and then it's very slow going. But he does talk, he doesn't have the bust-the-house-down tantrums nearly as often, and he is learning to cook and take care of his personal hygiene needs.

As your child grows, you'll also meet angels on the road that you wouldn't have met otherwise, like the teacher or support worker who bonds with your child and helps him learn stuff you never thought he'd learn. Or his older brother or sister, who can calm him and make him laugh when you personally want to punch a hole in the wall.

Here's to angels!

really good point! Sparky will be 17 this year. He can do laundry, he can drive the tractor, he can do his own mending, and he can cook -- when I was sick over Christmas, he and his brother made the entire Christmas dinner and trimmings, and did the Christmas baking. Its like the best of both worlds at Christmas here -- he has the skills to be helpful and to be with the adults, yet he views the whole holiday season with that exuberance and faith and excitement so many of us lose.

It does get easier. And Jersey, I had to laugh at the picture because Sparky was always in the cupboard. In school for the first two years, when he got overwhelmed, the teacher would let him sit under the table so he could regroup. One of the teachers even set it up with a blanket over the table, and a pillow underneath his tent so he felt comfortable there.

reigningcatsndogs
04-04-2008, 02:04 AM
For us, Sparky -- gets frustrated most when he can't get across his message
-- becomes fanatical about certain activities, items, and life without those things is unbearable.

He loves the water. He will be in the water from 6 in the morning till 9 at night. I remember pulling him out of the lake for supper, sitting him on my lap to eat, and he managed two bites of his hot dog. I have a picture of him asleep with the thing hanging out of his mouth. That year, we found out in the fall what he was doing out there -- he would dive down, pick up rocks from the bottom of the lake and pile them all together. When the water went down, he had a cairn built that was taller than I am.

He also loves being towed on a tube behind the boat. He would do it all day, except a couple years ago, he was out with a cousin and when he came back, we couldn't get him to go out again. We had no idea what happened, so we thought we would take him to the sports store to pick out the tube he wanted. I told the clerk that something had happened when he was on the lake one day, we couldn't understand what it was, but we hoped he would be able to find a tube that he would want to use again. She pulled me aside about ten minutes later and said that he went to her, found a tube like the offending one and showed her. His arm had slipped between the rubber tube and the bottom of the cloth cover and held him under the water. He picked out one that was sewn shut so that couldn't happen.

He was still afraid to go on the water though, even with a new wet suit. So, while out on the lake, I did what every stupid parent does and decided to show him it was perfectly safe. You have to understand that I HATE the water. If it doesn't have a bathtub around it, I don't want to be in it. You also have to understand that I am almost blind without my glasses. Add to that the fact that I am NOT a tiny person and I have never been towed on anything on the water, and you will understand how stupid I am. I told DH 'go slow and in a straight frigging line across the lake and then get me the heck outta here'. I took of my glasses, got on the tube, and away we went. I knew I would die. I couldn't see the boat, and I was afraid to let go of the handles to give anyone any stupid hand signals, and the water was rough so my head was bobbing up and down like some stupid dashboard dog. I was sure we were going fast... too fast, but I couldn't see (the tears didn't help) and then they went into a nice tight spin and the tube (with me) was airborne. My men figured out that I might not be having the time of my life as I passed them, screaming my damned lungs out. When I finally got out of the tube (and kissed the damned floor of the boat) Sparky came up to me and gave me a hug, and told me that if I could do that, knowing how scared I was, he could also do it -- as long as Dad went straight across the lake, slowly. Yes, he tubes again. No, I don't.

Cranky
04-04-2008, 03:05 AM
OK, here's a picture of my Trey. I took it this afternoon, and he's really not at 100%, health wise. He's getting over the same nasty cold as the rest of us. But I still think he's cute as can be. :D

http://s158.photobucket.com/albums/t115/jpayne75/th_Trey1.jpg

ETA: Wow. Um, it's a little smaller than I thought it would be. Sorry! LOL Also, that raggedy fabric you see is his Batman blanket. :D

III
04-04-2008, 03:46 AM
He is adorable and very photogenic, Cranky. And great story, RCD! I'm partying with you on the lake this summer!

Cranky
04-04-2008, 03:51 AM
He is adorable and very photogenic, Cranky. And great story, RCD! I'm partying with you on the lake this summer!

Thanks, Trey. Of course, I agree! And I think I'll join you two on the lake, lol!

Jersey Chick
04-04-2008, 03:55 AM
Trey is absolutely adorable! I just want to give him a squeeze!!! :D

We're hoping Jay will go in the pool this summer. He loves baths, but last summer, he clung to me and/or Daddy and cried in my in-laws pool. Hopefully he'll outgrow that soon... I'm hoping it's just a getting used to phase.

Tonight, at dinner, he dropped his juice cup on the floor and said, "Uh-oh" - which my husband and I were thrilled over. We start cheering and he kept it up all through dinner.

It's the little things, y'know?

stormie
04-04-2008, 03:57 AM
I just found this thread, thanks to Cranky! I have two sons, both with differing forms of Asperger's. They're young adults now, though diagnosed when they were little. You might find, as your children grow older, other components might manifest themselves. OCD, tricholomania (sp?), anxiety (gee, actually, that was when they were babies!).

Note: Older son was also born with a chromosome abnormality which caused neurological impairment and causes immunilogical disorders. Younger son has a lot of emotional problems. Forget crowds. Even now. Forget bright lights. He gets ill.

So, are you ready for my life? I used to teach. Now I find writing is my work, my career. Partly because I love it, partly because I can be home when their supportive workshop calls and tells me someone has to pick one of them up.

But--I love them. Love them so much! And my husband and I learned how to work through situations. You can't go against what their needs are. No matter how old they are.

It does get easier as they get older in the sense you know a little more about the road you're traveling. And so does society.

Okay. Thanks for letting me in!

Cranky
04-04-2008, 04:07 AM
Trey is absolutely adorable! I just want to give him a squeeze!!! :D

We're hoping Jay will go in the pool this summer. He loves baths, but last summer, he clung to me and/or Daddy and cried in my in-laws pool. Hopefully he'll outgrow that soon... I'm hoping it's just a getting used to phase.

Tonight, at dinner, he dropped his juice cup on the floor and said, "Uh-oh" - which my husband and I were thrilled over. We start cheering and he kept it up all through dinner.

It's the little things, y'know?

It absolutely is the little things! And that's great. :D Trey isn't too fond of the pool, either. The bigness scares him, I think.

But, since a lot of autistic kids are drawn to water, I'm going to try to get him into a swim class here soon. I want him to be able to swim.

And thanks. He looks so much like his daddy! Except Daddy has darker hair now, as an adult. :D

Cranky
04-04-2008, 04:08 AM
I just found this thread, thanks to Cranky! I have two sons, both with differing forms of Asperger's. They're young adults now, though diagnosed when they were little. You might find, as your children grow older, other components might manifest themselves. OCD, tricholomania (sp?), anxiety (gee, actually, that was when they were babies!).

Note: Older son was also born with a chromosome abnormality which caused neurological impairment and causes immunilogical disorders. Younger son has a lot of emotional problems. Forget crowds. Even now. Forget bright lights. He gets ill.

So, are you ready for my life? I used to teach. Now I find writing is my work, my career. Partly because I love it, partly because I can be home when their supportive workshop calls and tells me someone has to pick one of them up.

But--I love them. Love them so much! And my husband and I learned how to work through situations. You can't go against what their needs are. No matter how old they are.

It does get easier as they get older in the sense you know a little more about the road you're traveling. And so does society.

Okay. Thanks for letting me in!

I'm glad you found your way here, stormie! Anything you can share would be great. I still have a lot to learn. Trey is starting to show a lot of signs of anxiety as he gets older. Mostly, it manifests in an increased need for routines, I've discovered. We work around them the best we can.

stormie
04-04-2008, 04:13 AM
Books and articles can tell you only so much, but experience.... Priceless. I do get worn out, though! I know my sons have Asperger's, not classic Autism, but there are many similarities. Plus their aunt, my sister-in-law, is autistic. If I can help anyone, please ask! I've navigated--and am still navigating--"the system."

Cranky
04-04-2008, 04:17 AM
The system. Ugh. That's the worst part so far, imo. And the learning curve is so steep!

Here is a great website (http://www.wrightslaw.com/) for anyone who is interested. It's a great thing for parents of kids with ANY special needs. I'm buying the book ASAP.

Jenan Mac
04-04-2008, 04:23 AM
I wish someone had rattled on to me when Trey was smaller.


This is important for parents in general, but I think especially for parents of out-of-the-ordinary kids. I ended up meeting my two best friends through ASD channels. One has a daughter a couple of years older than mine, and one has twins about six years younger (one neurotypical, one still wearing the title PDD-NOS). And L, my friend with the littles, is the special needs go-to person for her twins' group. Kind of a pay it forward deal, I guess.

stormie
04-04-2008, 04:26 AM
We're writers, right? Right! Okay. If you're having some trouble, put your writing to work to navigate the system. You don't have to hire anyone to help you. Really. Just target whoever is in charge. Having problems with the Child Study Team? Go to the Supervisor of Child Study Teams in the county or state. Put it in hardcopy and mail it. It's what's helped me over the years. Also, there are advocates out there. Look for them. I've had several through the years and gave small gifts or donations to their cause to thank them.

On an interesting note: my younger son used to always have to have something clutched in his hand from the time he was a baby. One time for about two years, it was empty 1 litre soda bottles. Someone remarked that at least it wasn't empty scotch bottles!

Cranky
04-04-2008, 04:31 AM
We're writers, right? Right! Okay. If you're having some trouble, put your writing to work to navigate the system. You don't have to hire anyone to help you. Really. Just target whoever is in charge. Having problems with the Child Study Team? Go to the Supervisor of Child Study Teams in the county or state. Put it in hardcopy and mail it. It's what's helped me over the years. Also, there are advocates out there. Look for them. I've had several through the years and gave small gifts or donations to their cause to thank them.

On an interesting note: my younger son used to always have to have something clutched in his hand from the time he was a baby. One time for about two years, it was empty 1 litre soda bottles. Someone remarked that at least it wasn't empty scotch bottles!

:roll: Isn't that true! Oiy.

ETA: I really should remember to use those writing skills when crafting those letters. Why not? As you point out, it only makes sense. And a papertrail is soooo important.

On the advocate front, I have to say that the ARC here has been great! They provided an advocated for me for our first IEP meeting last year, I'm on their mailing list, and they do a lot of workshops. They're awesome! The advocate helped me for free, btw.

Another org that provides advocates (I don't know if they charge, btw), is NAMI. I'm going to look into getting an advocate from them, too, for the next IEP meeting, where I'm going to request a paraeducator for Trey. I anticipate a battle.

reigningcatsndogs
04-04-2008, 04:33 AM
They had a program here at the pool called AquaPercept that was designed for special needs kids. It had a 1 on 1 or 1 on 2 teacher/student ratio, and its an amazing program. My understanding is that it is a national program in Canada at the least, and that it may be available beyond. It might be worth a look-see to learn if it's available near you.

Cranky
04-04-2008, 06:24 PM
Some of you might have already read the Holland Schmolland (http://groups.msn.com/TheAutismHomePage/schmolland.msnw) essay, but I thought I'd post a link anyways, along with the link to the original that inspired it. (http://www.our-kids.org/Archives/Holland.html)

Yeshanu
04-04-2008, 06:53 PM
It absolutely is the little things! And that's great. :D Trey isn't too fond of the pool, either. The bigness scares him, I think.

But, since a lot of autistic kids are drawn to water, I'm going to try to get him into a swim class here soon. I want him to be able to swim.

And thanks. He looks so much like his daddy! Except Daddy has darker hair now, as an adult. :D

I don't know if you have a Special Olympics program where you are, but Robin just loves his Saturday nights at the pool.

I'm just worried--this is Robin's first year of being able to swim in the deep end. We go to the beach a lot during the summer, and we already have trouble keeping an eye on him because he's so tall, and can wade out pretty far. Now that he can swim...

And Robin also had blond hair as a young child (as did my older son), but they're both dark-haired now.

Cranky
04-04-2008, 06:57 PM
I don't know if you have a Special Olympics program where you are, but Robin just loves his Saturday nights at the pool.

I'm just worried--this is Robin's first year of being able to swim in the deep end. We go to the beach a lot during the summer, and we already have trouble keeping an eye on him because he's so tall, and can wade out pretty far. Now that he can swim...

And Robin also had blond hair as a young child (as did my older son), but they're both dark-haired now.

I've thought about the Special Olympics, but I guess I've just assumed he's too young for it yet. I'll have to check it out! Besides, I love swimming, and it could be something we can do together. :D

And my mom and brothers had blond hair as little tykes, and so did my two older boys. They all have darker hair now, too. *sigh* I suppose Trey will lose his goldey-locks, but gosh, they're adorable.

benbradley
04-04-2008, 08:06 PM
I regularly look at cnn.com and have seen their stories on autism in the last week or so, and have read a few of them. But most interesting was a story I heard this weekend on NPR.

First, a "lead-in" - I'll get to autism (specifically Asperger's Syndrome, which as anyone who has read John Robison's book "Look Me In The Eye" knows, is part of the "autism spectrum") in the next paragraph, but there's something technical "in the news" that brought it up. Rather than describe it myself, I'll just link to this NPR/All Things Considered story on the recent Comcast/bittorrent file sharing situation (gets a bit technical, 7 minutes of audio):
http://www.npr.org/templates/story/story.php?storyId=89225412

What relates this to the thread is the author/creator of bittorrent has Asperger's Syndrome. Here's a short (just under 4 minutes) but fascinating interview with him:

All Things Considered, March 30, 2008 ∑ Bram Cohen wrote a groundbreaking program called BitTorrent. Cohen, 32, has been coding since around five years old. Affected by Asperger's Disorder, he says he sometimes needs his friends to remind him what's socially appropriate.

http://www.npr.org/templates/story/story.php?storyId=89225415

I had to listen to the start several times to understand what he was saying:
"I was in the first grade, I had a Timex Sinclair and he had a Commodore 64, and I was basically trying to explain the Church-Turing Thesis to my classmate, and he had no idea what I was talking about..."

http://en.wikipedia.org/wiki/Church-Turing_thesis

A relevant quote from the interviewer: "...Cohen taught himself to look people in the eye during conversations."

"... not always socially appropriate to tell the truth." From my own experience, I didn't really learn to lie until my 30's when I was in a group that ironically demanded "rigorous honesty." But that's a whole 'nother story...

There's some things I can relate to very well about Asperger's, and some I can't, so if I were growing up now I don't know if I would be diagnosed with it or not. But I do recall at age 15 talking to a psychologist (long background story short: the schools were pointing out to my parents that I was having behavior/emotional problems as early as first or second grade), after a few minutes he said "you look at yourself when you talk, did you know that?" I didn't answer, but I knew I wasn't really trying to look at myself, I was just looking down, avoiding looking at the person I was talking to.

Salem
04-04-2008, 08:09 PM
Thanks for the links, Ben.

BTW, Bill Gates has Asperger's and he seems to be doing okay. ;)

Cranky
04-04-2008, 08:10 PM
Thanks for the links, Ben.

BTW, Bill Gates has Asperger's and he seems to be doing okay. ;)

That's the rumor, but I don't think it's been confirmed yet. Would be nice if he would say, one way or another...

benbradley
04-04-2008, 08:11 PM
Jersey, your boy in the glass case is just too cute. I'm wondering where the stereo is ... if you give him a CD, will he sing the songs on it?:)

Cranky
04-04-2008, 08:22 PM
For those who may be curious, here is the criteria for diagnosing Autism Spectrum Disorders.


Diagnostic Criteria for 299.00 Autistic Disorder

A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity
qualitative impairments in communication as manifested by at least one of the following:
delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
stereotyped and repetitive use of language or idiosyncratic language
lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
The disturbance is not better accounted for by Rettís Disorder or Childhood Disintegrative Disorder.
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Diagnostic Criteria for 299.80 Asperger's Disorder

Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
lack of social or emotional reciprocity
Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects
The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
For more information on Aspergerís Disorder, see one of the following:

MAAP Services for Autism, Asperger's, and PDD
Online Asperger Syndrome Information and Support (OASIS)
Asperger Syndrome Education Network (ASPEN)
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299.80 Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism)

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

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Diagnostic Criteria for 299.80 Rett's Disorder

All of the following:
apparently normal prenatal and perinatal development
apparently normal psychomotor development through the first 5 months after birth
normal head circumference at birth
Onset of all of the following after the period of normal development:
deceleration of head growth between ages 5 and 48 months
loss of previously acquired purposeful hand skills between 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
loss of social engagement early in the course ( although often social interaction develops later)
appearance of poorly coordinated gait or trunk movements
severely impaired expressive and receptive language development with severe psychomotor retardation
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Diagnostic Criteria for 299.10 Childhood Disintegrative Disorder

Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.
Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
expressive or receptive language
social skills or adaptive behavior
bowel or bladder control
play
motor skills
Abnormalities of functioning in at least two of the following areas:
qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
restricted, repetitive, and stereotyped patterns of behavior, interest, and activities, including motor stereotypes and mannerisms
The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia

dolores haze
04-04-2008, 08:24 PM
I'm curious. Does anyone's health insurance cover any of their children's treatments?

Salem
04-04-2008, 08:25 PM
I'm curious. Does anyone's health insurance cover any of their children's treatments?

Only if you get it through an employer's group insurance plan. When I was doing freelance work I tried to get coverage for my son and no one would insure him.

Cranky
04-04-2008, 08:26 PM
I'm curious. Does anyone's health insurance cover any of their children's treatments?

Yes, but only because we're poor enough (thanks to our family size) to qualify for Medicaid for the kids. Once the hubby finishes his degree, though, he'll have a better paying job, and that will be gone.

Katie Beckett waivers (http://www.infoline.org/InformationLibrary/Documents/Katie%20Beckett%20Waiver%20cw.) are available in some states, though.

TerzaRima
04-04-2008, 08:38 PM
BTW, Bill Gates has Asperger's

I would very much doubt this.

Cranky
04-04-2008, 08:50 PM
Hee! I just got Trey to hold a cupcake of carrot cake. He's never seen anything like that (we don't do much in the way of cupcakes, we're cookie people), and he wanted nothing to do with it at first. Freaked out, actually.

I got him to hold it, and now he's fingering the frosting. Can't be long before he decides it's worthy of eating. Sorry, this is just cracking me up, so I had to share.

reigningcatsndogs
04-04-2008, 09:09 PM
I'm curious. Does anyone's health insurance cover any of their children's treatments?
In Canada, all basic helath care costs are covered. If he need prescriptions, we need private insurance for that, which we have. Any special programs however, are not covered at all, either but the government program or most insurance plans. We also ran into a problem getting services once we pulled Sparky out of the public school system. Once a child reachs school age, all of their therapy is to be provided by the school district, and cannot be accessed any other way other than through private payment. The school district, while he was still in there, would not give him occupational therapy and gave him 20 minutes of speech therapy every other week (with no follow-up at home or in the classroom in between sessions). When we took him out of the system, we got nothing that we didn't provide ourselves.

Jersey Chick
04-04-2008, 09:35 PM
I'm curious. Does anyone's health insurance cover any of their children's treatments?
In NJ, it's on a sliding scale according to the family income from the previous tax year. We lucked out - my husband had just finished up his apprenticeship, and missed 12 weeks of work due to shoulder surgery (It's been a fun few years in our household :D) - so we fell in the category of not having to pay for it.

Our health insurance would cover it if my son didn't qualify for Early Intervention, or he ages out and still needs treatment (in NJ, the EI program runs to the child's 3rd birthday). If we chose to do private therapy, the insurance would have covered part of the cost, but not all.

stormie
04-04-2008, 10:15 PM
A story about special ed:

My older son was mainstreamed throughout elementary school, against the Child Study Team wishes. He had an aide he shared with another child. High school--self-contained classroom because 1,000 student enrollment in regular classes was daunting for him.

Younger son: by the fourth grade, inclusion did not work for him. He was too sensitive to all the sounds, sights, smells (God forbid if a child threw up!). We put him in a self-contained class. As I mentioned previously, he always had to have something clutched in his hand. At nine he was carting around Brio or Matchbox-sized small train engines. The special ed teacher (who is still there unfortunately for those kids) grabbed his toy from him and threw it up on a high shelf near the ceiling. What do you think happened? Major meltdown. From then on we had the district send him to schools where the spec.ed teachers knew what they were doing. A few problems here and there, but again, a lot of letter writing!

Yeshanu
04-04-2008, 11:18 PM
In Canada, all basic helath care costs are covered. If he need prescriptions, we need private insurance for that, which we have. Any special programs however, are not covered at all, either but the government program or most insurance plans. We also ran into a problem getting services once we pulled Sparky out of the public school system. Once a child reachs school age, all of their therapy is to be provided by the school district, and cannot be accessed any other way other than through private payment. The school district, while he was still in there, would not give him occupational therapy and gave him 20 minutes of speech therapy every other week (with no follow-up at home or in the classroom in between sessions). When we took him out of the system, we got nothing that we didn't provide ourselves.

In Ontario, they started covering intensive behavioural therapy for children under five a few years back, but Robin was already too old. I think there was a court case which got the age limit extended.

In Robin's case, he's had some wonderful teachers at school that have provided what he needs. We found that speech therapy didn't do much for him. He went for a few years (covered by OHIP), but it didn't increase his use of language. I think the therapist was more used to dealing with children who had hearing impairments than with autistic kids.

ETA: He was mainstreamed until the middle of Grade Three, when the excess stimulation got to be too much for him. Things improved dramatically once he was in a special needs class where the teacher understood what autism was and how to deal with it.

Robin's dad is a glutton for punishment, btw--he's a special education teacher at another board of education.

Jenan Mac
04-05-2008, 05:27 AM
I'm curious. Does anyone's health insurance cover any of their children's treatments?

We're sort of laid-back about it all at this point. She does have anti-anxiety meds, because she was terrified to the point of inactivity of everything in her world, long about third grade. Low-dose anxiolytics have made a world of difference. So yeah, insurance covers that, and the psychiatrist who does her med management. But OT and PT would be covered through the school system, if she were getting it. She has motor planning deficiencies and low muscle tone in her upper extremitites, and 1:1 swimming lessons are doing more for that than PT would, without the stigma. (Which unfortunately is a huge deal as we go into adolescence.)
She gets social skills group through the school, but I don't think it's occurred to any of the little girls involved that it's more than just "lunch with Mrs T" every other Friday.
Honestly, the most therapeutic thing I could wish for any kid with an ASD is a neurotypical twin. Her brother has dragged her, sometimes literally kicking and screaming, into a lot of things.

dolores haze
04-05-2008, 05:08 PM
First, thank you to all who responded to my question regarding funding for treatments. From your answers it seems that funding has become more available to families. I've worked with many families who had to pay large amounts of money out of their own pockets to pay for various therapies, as well as families who had to forgo various therapies due to lack of money. It seems to be getting better.



Honestly, the most therapeutic thing I could wish for any kid with an ASD is a neurotypical twin. Her brother has dragged her, sometimes literally kicking and screaming, into a lot of things.


Excellent point! The sibling relationship is so very important. I've conducted sibling sessions, where I taught siblings how to play together in ways that satisfied them both and increased their sibling bond. I started doing it because one little guy complained to me that he couldn't get his autistic brother to "play properly." Teaching them how to play hide and seek together made them both very happy (and helped the autistic brother to hit a major developmental milestone.)

Here's a link about siblings:

http://www.autism-society.org/site/PageServer?pagename=about_lwa_siblings

Jersey Chick
04-05-2008, 07:14 PM
My daughter - who's almost 5 years older than my son - is probably the best therapist he could have. He adores her and she adores him (for the most part - she's not perfect, yanno! ;))

She's his best friend - and he's been lost without her this week while she's in FL visting her grandparents (home this afternoon, woo hoo!) - every day, around the time she'd be getting home from school, he's been going to the front door, waiting for her. Today, when I told him she was coming home today, he smiled and almost said her name - which is a first....

Ahh.... the little things DO mean a lot! :D

Cranky
04-05-2008, 07:20 PM
I agree on the sibling thing. Trey has three brothers, two older and the younger bro. Ace and Deuce are quite a bit older, so they aren't playmates much unless Trey wants to play with lightsabers (which happens), but they're great cheerleaders for Trey's accomplishments.

Gaby-baby is Trey's main playmate and roommate. They fight, even. LOL! But Gaby will often share what he has with Trey, talks to him all the time, and even nags him. It's pretty funny to watch them, actually. Trey's learned to share a little bit, thanks to Gaby-baby.

Cranky
04-05-2008, 07:47 PM
BTW, here is a link to Autism Speak's 100 Days Kit (http://www.autismspeaks.org/community/family_services/100_day_kit.php), which is full of some really good stuff for families who are new to the diagnosis.

Cranky
04-08-2008, 02:41 AM
Bumping with a question for some of the other parents here:

Any of you have to deal with a spitting "stim"? Omg, Trey is doing this almost constantly now, and nothing I do to redirect him is working. He's spitting his drinks, btw, not saliva. And it's been going on for MONTHS. Ugh.

Any insights you might have would be GREATLY appreciated. It's driving me bonkers!

reigningcatsndogs
04-08-2008, 02:47 AM
Maybe changing the texture of his drink? :Shrug: Maybe exaggerated positive reinforcement for a while? Does he like drinking with a straw? Maybe if you let him use the straw to drink nicely and take it away when he spits -- find him one of those wild curly straws in his favorite color.

Really, I got nothing off the top of my head (I was grasping for straws;)).

Cranky
04-08-2008, 02:49 AM
Maybe changing the texture of his drink? :Shrug: Maybe exaggerated positive reinforcement for a while? Does he like drinking with a straw? Maybe if you let him use the straw to drink nicely and take it away when he spits -- find him one of those wild curly straws in his favorite color.

Really, I got nothing off the top of my head (I was grasping for straws;)).

Hey, no worries, Mary. He does it no matter what the drink, and he hates straws, so maybe the exaggerated positive reinforcement is the way to go. Ignoring the behavior only goes so far, and in the meantime, my rug is getting repeated daily showers. Ick.

Thanks. I'll give it a try. It can't hurt!

dolores haze
04-08-2008, 06:50 PM
I've been a SAHM for a couple of years now, so I'm trying to shift my brain back into professional mode *creak*

For a puzzling new behavior the first step is usually to rule out a medical reason for it. He may, for instance, have a sensitivity to cold liquids. I have this myself and have to drink cold liquids in a way that they don't touch my teeth *shiver down my spine just thinking about it* He may have a cavity or a wiggly tooth, and the sensation of liquid around that area is over- stimulating or just plain uncomfortable. Are there any other problems around eating or teethbrushing or is it just the liquids? Does he do the same with warm liquids? What about liquid food like soup? What about liquidish foods like jello or oatmeal?

Is the new behavior a replacement for a previous behavior? For instance, has he recently had to give up a bottle or a binkie or a sippy cup? Was there any other related precursor to the new behavior that you can think of? Does he swallow the first few mouthfuls of his drink, then start spitting? (He may be telling you he's had enough) Or is he spitting right from the first sip?

Keep it in perspective: I have two boys, and they are pretty gross. They like spitting their drinks, blowing bubbles into their milk, mushing up their food in their mouths and showing each it to other, and just generally showing each other how gross they can be. Trey isn't necessarily gonna understand that it's gross, though, so I don't advise just waiting for him to grow out of it.

The exaggerated pos. reinforcement (R+) for when he DOESN'T spit is a good idea. Another idea is ignoring* Trey's spitting (use a splat mat for the sake of the rug) while giving massive amounts of R+ to all the non-spitters around the dinner table. Get the whole family involved and make it into a fun game. Hee, hee - I'm sure your hubby will love getting praise for not spitting his drink! (The idea is that Trey thinks "shoot, why are THEY getting all the high fives", until HE gets one for not spitting, therefore gradually increasing his awareness that spitting his drink will get him no attention whatsoever, while NOT spitting his drink WILL.)

* a little note on ignoring: There is a difference between "plain" ignoring and "planned" ignoring. No behavior should ever be plain ignored, but sometimes ignoring a behavior for a very good reason is highly effective. What is your reaction when he spits his drink? A big sigh? A grimace? To Trey, these things may be a pretty sound or a funny face - he might enjoy those reactions. So, "planned" ignoring would be something you've thought out, and the ignore should be a blank face - no reaction whatsoever, as opposed to an exaggerated positive reaction for not spitting. Autistic kids can have a lot of difficulty interpreting subtleties in social interaction, which is why the exaggerated response is encouraged.

*eek - my brain is really creaking now*

Another tactic (possibly used in conjunction with the family table described above) would be to consign the behavior to a very specific place and time. E.g., after brushing his teeth he is allowed some time for water play at the bathroom sink. He can fill cups of water, drink, spit it in the sink to his heart's content. This will give him an outlet for something he may very well enjoy doing (see grossness of boys above), while teaching him that certain activities will only be tolerated in the right place and time. I, in my professional life, have relied quite heavily on finding acceptable outlets for an unacceptable behavior. The problem with extinguishing a particular behavior is that it treats the problem, but not the cause.

E.g. Problem = spitting
Cause = it's fun!
Intervention = extinguishing the spitting
Result = child develops another oral stim. behavior that he
finds "fun", including the dreaded saliva play.

A note on positive reinforcement: All kids are different, and what they find reinforcing is different. Some kids love the high five, some kids love the verbal praise, other kids will need something more tangible (like a crunchy potato chip or a trading card). It's important to know what the reinforcers for any particular child are and to have an array of them.

Near the top of the thread I recommended a book called "Progress Without Punishment." It uses a lot of technical terms, but I think it's important for parents to be familiar with the lingo and the techniques. You will come into contact with many professionals as your children grow, and it's very helpful to be able to speak their language. It will also help you identify those people who aren't terribly knowledgable, and help you select the people that you want working with your children. Personally, I am against the professional use of aversives, but not every professional is. Parents should be familiar with what they are, and if they are comfortable with a professional who uses these techniques. If your child is prone to aggressive or self-injurious behavior parents should be knowledgable about the use of physical restraints and whether or not they are comfortable with these techniques being used on their child.

I'm a little nervous about clicking "submit reply," so I'm issuing a disclaimer. A message board post is no substitute for a professional evaluation. Do you have access to a good behavioral therapist and/or an occupational therapist that has been trained in sensory integration techniques? I don't know where anyone lives, but I've lived in several areas of the US where these services were available.

I'm going back to work in September, and I think I need to start getting ready. Thanks for helping my brain start getting back into work mode! This book has been highly recommended to me:

http://www.amazon.com/Raising-Sensory-Smart-Child-Integration/dp/014303488X

Hope I've been a little helpful.

Cranky
04-08-2008, 07:00 PM
Thanks, dolores! Yeah, ignoring is a difficult trick to pull off. He's not a big one for praise and reinforcement, either, so that's also tricky, trying to find the correct rewards. :)

I am NOT a fan of aversives, and neither are his therapists. The most he gets is 30 second time outs, followed up with a positive reinforcement for good behavior as soon as possible afterwards. Ideally, inside 30 seconds, if we can.

Toothbrushing is an absolute nightmare with him, and I dread taking him to the dentist. He's very tacticle defensive around the head, but he's getting a cavity (gee, big surprise, huh?), so it's got to be taken care of. That might be part of the problem, I suppose.

*sigh*

:) Good luck with getting back into the swing of things! I think work like this is pretty hard, but pretty rewarding. I'm sure the kids you work with (or will), will be lucky to have you! Thanks for sharing your expertise...I really do appreciate it. This is less than fun, as you can imagine. LOL

dolores haze
04-09-2008, 06:34 PM
Thanks, dolores! Yeah, ignoring is a difficult trick to pull off. He's not a big one for praise and reinforcement, either, so that's also tricky, trying to find the correct rewards. :)

What I've found very frustrating in the past is finding a reinforcer that works, getting all excited, and then over-using it for lack of alternatives. The kid then "satiates" on the reinforcer, and it doesn't work any more. One thing I've used as reinforcement is 'free play'. It probably works better for a professional conducting a learning session, though. After making a kid work really hard for whatever period of time they can tolerate I'll say 'go play", set the timer, and just leave them the heck alone. (The kid is thinking "Yay! Bossy lady ain't bugging me!)


I am NOT a fan of aversives, and neither are his therapists. The most he gets is 30 second time outs, followed up with a positive reinforcement for good behavior as soon as possible afterwards. Ideally, inside 30 seconds, if we can.

Yeah, I've used time-outs exactly as you descibe. For some kids, though, it just doesn't work. If, for instance, I'm teaching a kid how to put legoes together, and he's throwing the legoes 'cos he's frustrated, then giving a time-out is reinforcing. The kid starts to figure out that throwing legoes means that he will be released from a frustrating task. Still, it does work under lots of other situations, and I use time-outs with my own kids regularly. I see it more of a natural consequence than an aversive.


Toothbrushing is an absolute nightmare with him, and I dread taking him to the dentist. He's very tacticle defensive around the head, but he's getting a cavity (gee, big surprise, huh?), so it's got to be taken care of. That might be part of the problem, I suppose.

I've come across the tothbrushing problem a lot. It's a tough one! We got so lucky with my brother because he really liked the minty taste of toothpaste. He also loved the crunchy textures of apples, carrots and celery, so he got a lot of those naturally cleansing snacks. Bro absolutely hated getting his hair cut, though. He had some pretty goofy hairstyles over the years. Dental visits were kept to a minimum because they were so traumatic for everyone involved. Bro got a mild sedative before dental visits. It's controversial, I know, but it really helped. We tried to keep a sense of humor about it. The running joke was that EVERYONE should have gotten a sedative - even the poor dentist.

I can't find a site that I came across a few years ago about the long process of desensitization to dental visits. I'll try and find it if it is something you haven't tried yet. Let me know.

You may have already tried these things, but just in case you haven't: There are lots of different toothpastes available now - different flavors, herbals, sparkly, etc. Also, the softest toothbrushes can be much more tolerable than the harder bristled ones. Also, there are lots of interesting toothbrushes - electric, sonic, twirly, flashing, made out of cartoon characters, etc. You might turn that spitting thing to your advantage by teaching Trey how to swirl and spit in the bathroom sink after eating - maybe with a herbal mouth rinse. If cold liquids are bothering that cavity maybe use warmer water for tooth brushing, and give him room temp liquids for drinking.



*sigh*

I hear you. I hope you are finding the time to take proper care of yourself. Don't feel guilty for taking the time for you - even pamper and spoil yourself a little. You deserve it and you need it.


:) Good luck with getting back into the swing of things! I think work like this is pretty hard, but pretty rewarding. I'm sure the kids you work with (or will), will be lucky to have you! Thanks for sharing your expertise...I really do appreciate it. This is less than fun, as you can imagine. LOL

This thread has really gotten me all excited about going back to work! I think I'm going to go back to working with adults, though. A lot of people prefer to work with the kids, and the adults can get the short end of the stick. A lot of the adults I've worked with spent many years in institutions. Their stories would make you cry rivers and oceans. Nothing is more important than a loving, supportive family. NOTHING! So all you parents and brothers and sisters and grandparents and uncles and aunties and cousins and neighbours out there, who are working so hard and caring so much - I salute you. And from the bottom of my heart - I thank you.

Cranky
04-09-2008, 07:00 PM
What I've found very frustrating in the past is finding a reinforcer that works, getting all excited, and then over-using it for lack of alternatives. The kid then "satiates" on the reinforcer, and it doesn't work any more. One thing I've used as reinforcement is 'free play'. It probably works better for a professional conducting a learning session, though. After making a kid work really hard for whatever period of time they can tolerate I'll say 'go play", set the timer, and just leave them the heck alone. (The kid is thinking "Yay! Bossy lady ain't bugging me!)

LOL! I know what you mean. Trey used to get very frustrated with his speech therapist, and he'd just sprint when she gave him a break. :)




Yeah, I've used time-outs exactly as you descibe. For some kids, though, it just doesn't work. If, for instance, I'm teaching a kid how to put legoes together, and he's throwing the legoes 'cos he's frustrated, then giving a time-out is reinforcing. The kid starts to figure out that throwing legoes means that he will be released from a frustrating task. Still, it does work under lots of other situations, and I use time-outs with my own kids regularly. I see it more of a natural consequence than an aversive.

Trey likes to be left alone, too. And therapy is hard work, so we have to be judicious in our use of time outs. I use them only for serious misbehavior, so they don't lose their punch, so to speak.


I've come across the tothbrushing problem a lot. It's a tough one! We got so lucky with my brother because he really liked the minty taste of toothpaste. He also loved the crunchy textures of apples, carrots and celery, so he got a lot of those naturally cleansing snacks. Bro absolutely hated getting his hair cut, though. He had some pretty goofy hairstyles over the years. Dental visits were kept to a minimum because they were so traumatic for everyone involved. Bro got a mild sedative before dental visits. It's controversial, I know, but it really helped. We tried to keep a sense of humor about it. The running joke was that EVERYONE should have gotten a sedative - even the poor dentist.

I can't find a site that I came across a few years ago about the long process of desensitization to dental visits. I'll try and find it if it is something you haven't tried yet. Let me know.

I've heard about that, but I haven't followed up on it, so I'd love to read it. I'm also starting to check around for a dentist who deals with special needs patients that's covered by our insurance. We've been experimenting with different brushes, and he likes to hold them and such, but putting anything in his mouth is a battle. He just recently (like the past couple of weeks) began eating with a spoon. It took him a long time (years!) to desensitize him to that. Oiy. But we just keep trying. :) I've also just spotted a commercial for this Smart Rinse stuff by Listerine. It shows what you missed when you brush, so if nothing else, maybe it will help, if I can get him to spit that out, and not swallow. Probably not too hard, since it's his favorite thing, lol.



I hear you. I hope you are finding the time to take proper care of yourself. Don't feel guilty for taking the time for you - even pamper and spoil yourself a little. You deserve it and you need it.

I come here a lot. Does that count? LOL But, that's still very good advice. Thank you.


This thread has really gotten me all excited about going back to work! I think I'm going to go back to working with adults, though. A lot of people prefer to work with the kids, and the adults can get the short end of the stick. A lot of the adults I've worked with spent many years in institutions. Their stories would make you cry rivers and oceans. Nothing is more important than a loving, supportive family. NOTHING! So all you parents and brothers and sisters and grandparents and uncles and aunties and cousins and neighbours out there, who are working so hard and caring so much - I salute you. And from the bottom of my heart - I thank you.

That sounds like interesting work, too. That's one of the areas I really feel need more attention: the lack of suitable services for autistic adults. It is my greatest fear that my son would end up in an institution, especially after we're gone. We're trying to put a little bit of money aside in a special needs trust for him (and if it turns out he doesn't need it, cool. Money will be split amongst all the kids, then. We're also thinking about buying him a small home when he's older. Maybe a condo or something, where he can have staff come and help him, but he can live in his own home. We'd start moving him in and all that before we pass, of course, so he could get used to it, but part of me (selfishly, I know) would be just fine if he stayed home for the rest of our lives. It's not practical, or good for him, I don't think, for that to happen, but like I said, it's a small, selfish part of me. :)

Good luck, and thanks so much for taking the time to share what you know. These things can be so tricky!

Cranky
04-11-2008, 03:37 AM
Bumping with a small vent. I hope you all don't mind.

This has been a tough week. On Tuesday, my almost three year old was evaluated by EI, and he qualified for speech services. No other issues detected, thankfully (and as I already believed), but that means weekly therapist visits again. And a third child for me recieving special education services. Tough pill to swallow, but I truck onward.

Then, the past few days, Trey has seemed out of sorts, but not by much. Then I get a call from his teacher today, and I can hear him crying (screaming, actually) in the background. He's had a very bad week, and she wanted to know what had changed, and if we'd taken him off his meds again, because he was being very violent. Headbutting, slapping, punching and kicking both her and the aides. They had to restrain him, to keep him from hurting them or himself. He was head banging again, too. He wants to do nothing but blow bubbles during class, and he's using his PECS to request them. That last part is great, but obviously presents some problems. Looks like we're going to have to have an Functional Behavioral Analysis, and I have to talk to his psych about the meds.

Then, to top things off, I got my older boys' report cards. My oldest son is doing well, and making progress on his IEP goals. He's getting 3's and 4's on his report card and has left his special reading group behind. He's just getting speech now. That's great. The not so great part is that my seven year old is showing signs of a speech problem as well. His expressive language is not very good, and his fine motor skills need work. He is very immature, as well. Delayed, maybe? Even his drawings are immature. So, now I need to have HIM evaluated as well.

I just want to curl up in a corner somewhere and just cry. I don't understand how this can be happening!

reigningcatsndogs
04-11-2008, 04:02 AM
:Hug2: Cranky, lots of hugs for you and your family. I wish I could do more.

Cranky
04-11-2008, 04:07 AM
Hugs are great, Mary. Really. I'm just a little weary from trying to roll with the punches, when they just keep on coming.

Eventually, I'll get to a place where things just "are what they are", so to speak. It's just takes time to get there. But of course, you already know that. :) Just being able to talk about it a little helps.

I am dreading telling Mr. Cranky when he gets home. He's my rock, and takes all this in stride, but...you know?

reigningcatsndogs
04-11-2008, 04:12 AM
Yup, you would just like a few moments between each hit so you can regroup and at least steel your muscles for the next round. The hugs, the shoulder -- they're available whenever you need them. And hug your babies and hold on to DH. You'll get strength from them. :Hug2:

flutecrafter
04-11-2008, 06:23 AM
Thanks for the thread III.

I'll have to read the remaining pages later, but thought I might chime in now anyway. :)
Both my kids are Aspies, with my daughter being more classic than my son. Through various dietary and other interventions they are getting better with each passing month now. It's been a long haul, but if it has taught me anything besides trusting God, it's that nothing is impossible.
Find their strengths and play to them, then with the added confidence this gives you can branch out to working on trouble areas.

Mark

flutecrafter
04-11-2008, 06:31 AM
*hugs*
Hang in there Cranky and keep rolling with those punches.

Some advice on how to slip a few of them completely while you're on the ropes follows:

Somehow, someway, cut out the artificial colors from their diets, and start keeping a food log to gauge relationships between issues and food.
My son got pretty violent with artificial colors and corn in his diet.
It was a neurological allergy response.

It's been a long road, but he's in 10th grade now and plotting for a multiple woodwind performance major at UNT.

I try to keep different things in a private folder on my home forum for dealing with things in the Autism spectrum.
you can find me at www.ancientcrossroads.org if I don't pop in here for a while.

Mark

Cranky
04-11-2008, 06:38 AM
Thanks, Mark, for the hugs and the advice. I've been thinking about changing their diets already. Maybe GF/CF, plus the artificial colorings and stuff. It'll be a bit expensive, but less so if I put everyone on it, not just one, I think.

kuwisdelu
04-11-2008, 07:57 AM
Hi all!

I've been here on AbsoluteWrite for a quite a while and I've mentioned it before on some other threads, but my girlfriend and I both have Asperger's syndrome. Neither of us would change a thing.

I really hope that autism and Asperger's will get more positive attention from the public in the coming years. And by positive attention, I mean I really hope that the Autism Awareness movement overtakes the foolish, biased, and downright offensive movement that calls itself Cure Autism Now. I'm always excited about autism education and spreading awareness of a condition that can really be seen as a different way of thinking rather than some kind of illness. It always makes me angry whenever I hear people talk about curing autism. I'm very happy with the way I am. I don't think I'd be half as good a writer if I weren't too some extent autistic.


And sooner or later someone's gonna have to mention our own John Robison's book Look Me In The Eye (http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1207245685&sr=1-1)

That looks like an awesome book! I immediately identified with the title and the cover picture. I can't imagine a better cover or title to convey a book from an Asperger's perspective.


I'm posting a short excerpt of a really great essay that I emailed out to family and friends after Trey was diagnosed. Here is a link to the full essay (http://www.southflorida.com/sfparenting/sfe-sfp-autism,0,6196233.story), ETA: written by Ellen Notbom, and there is also a book by the same title.

That's a great essay. I wish I could hand it out to everyone I meet so they know how to deal with me :D


I doubt it. (responding to Bill Gates having Asperger's)

Actually he does. He's come out about it publicly. If you look at the hearings back when Microsoft was under investigation for being a monopoly and illegal business practices, you can really tell.

There are a lot of famous, brilliant people alive and dead who were Asperger's or autistic, even though most of the public will never know. Bill Gates is only one. Jim Carrie is very open about it, too. Looking back in time, there are many who have never officially been diagnosed (since autism wasn't known about until recently), but likely had some form of autism, too, such as Einstein, Van Gogh, Mozart, and so on. Beyond those, many of the other most brilliant people in the history of humankind are speculated to have been autistic: Charles Darwin, Thomas Jefferson, writer James Joyce, physicists Paul Dirac and Isaac Newton, and many more.

See here (http://en.wikipedia.org/wiki/People_speculated_to_have_been_autistic).

;)

reigningcatsndogs
04-11-2008, 08:12 AM
I'm always excited about autism education and spreading awareness of a condition that can really be seen as a different way of thinking rather than some kind of illness.


Thanks for your post! My son has asked me why he is different from the other kids. He's asked me why this has happened to him, not complaining or whining, but just curious. I have told him what I believe with my heart -- we need people like him because he is the ultimate 'outside the box' thinker. He sees things with a perspective most could never dream of. His strengths are incredibly strong. I've told him that he is in very special company, he has a connection to people who have made tremendous contributions to our lives. If we all think the same way, all of us are going to miss on some amazing, wonderful, life-altering things. I've told him that the world needs people like him.

He's got an incredible library of information in his head, moutains of knowledge. Some of he he can put his fingers on immediately, and some of it, well, its been misplaced in the card catelogue! It's there, but he just doesn't see the need to use it as much, or has problems finding it when he needs it. When he gets very frustrated by this, I remind him -- Albert Einstein, one of the smartest men in all of history, needed to have his address written on a piece of paper and pinned to the inside of his jacket so he could find his way home every day. It was something his wife made sure was in place. His mind was so busy with his 'important' issues that the mundane often got misplaced.

stormie
04-12-2008, 12:16 AM
For anyone interested, Temple Grandin's (http://www.templegrandin.com/) books are great. She's able to relate how she thinks and perceives the world around her.

flutecrafter
04-12-2008, 01:36 AM
Kuwisdelu,

I am glad you are happy. I, however, get to deal with things like my little
girl crying in my lap and asking me to find a way to 'fix it' so she can deal
with things..
There are many things involved.
oh.. btw... my son is still the same person he was when we started finding
things to help him. It's just a great deal easier for him to deal with the rest
of the world.



Cranky,
You may indeed see some help on GF/CF it was one of the other things we
did for the kids.
Yes, it can be expensive, and baking is challenging, but it is worth it.
you will need to buy some flours at the local health food store, but for
rice flour, look for an Asian market in your area. The difference in price
is incredible here.

Drop me a line if you need a few recipes.

Mark

Jenan Mac
04-12-2008, 03:44 AM
You may indeed see some help on GF/CF it was one of the other things we
did for the kids.
Yes, it can be expensive, and baking is challenging, but it is worth it.
you will need to buy some flours at the local health food store, but for
rice flour, look for an Asian market in your area. The difference in price
is incredible here.




And Filipino rice noodles are absolutely the best, even if you don't do gf/cf.

kuwisdelu
04-12-2008, 11:37 AM
Kuwisdelu,

I am glad you are happy. I, however, get to deal with things like my little
girl crying in my lap and asking me to find a way to 'fix it' so she can deal
with things..
There are many things involved.
oh.. btw... my son is still the same person he was when we started finding
things to help him. It's just a great deal easier for him to deal with the rest
of the world.

Well I'm not always happy, of course. Fortunately for me, as a child I usually went to private schools so I didn't have to deal with the public education, and I never seemed to care very much about being so "weird" compared to most of my peers. I was very lucky in this regard. It hasn't always been easy, though. In high school, my misinterpretation of some otherwise very blatant social cues got me into trouble multiple times, and once almost completely destroyed a very important relationship of mine. There have been times I've really hated being so different, but at the end of the day, it's still a part of me.

The way I see it, it's not always something that has to be liked, or that one always has to be happy about it. It's just another of the many differences with which we're born. Just like race, really. We can't choose it. Sometimes the hand we're dealt can really hurt. Being a Jew during the Holocaust. Being black during slavery. But it's part of growing up to accept such things as who we are, and even being proud of it, which is something that often requires time, experience, and nurturing.

reigningcatsndogs
04-16-2008, 01:04 AM
Sparky is just finishing up Grade 11 this spring. He came to me the other day to tell me he wants to go to university. I was so caught off guard. He wants to get into the sciences -- biology or marine biology or ecology...

I've spent the last 17 years preparing myself for just getting him to the point where he could survive on his own. I guess its time for a new lesson for me; don't ever underestimate these kids.

TerzaRima
04-16-2008, 01:23 AM
He's come out about it publicly. If you look at the hearings back when Microsoft was under investigation for being a monopoly and illegal business practices, you can really tell.

If he has, I wonder if you have a link to this. I've seen him interviewed, and I've seen the famous video where he rocks back and forth while being deposed. But it takes a lot more than repetitive behaviors to make the diagnosis of AS, and if he has been diagnosed I'd be very, very surprised. He strikes me as an introverted guy with not a lot of social skills. All the way into AS? No way.

Having read their biographies, I'd be surprised about James Joyce and Thomas Jefferson as well--I can't speak to the other historical figures you named. I do think there's a tendency to diagnose the odd and obsessively brilliant in retrospect with Asperger's syndrome, which is understandable but a real distortion of a very complex condition.

Maryn
04-16-2008, 05:10 AM
There's nothing funny about autism, but there is about baseball announcers. The first time I heard one of the announcers say this during a Yankees-Red Sox game, I thought he'd just misspoken, but he repeated it word for word twice more, so it was clearly scripted:

Major League Baseball supports autism.

Say what? Golly gee, do they also support cancer, or maybe aneurisms? It's obvious what they're trying to convey, but that's sure not what they said.

Maryn, whose first thought was "dumb jocks"

Cranky
04-16-2008, 07:17 AM
Bumping with a plug for Jim Sinclair's (IMO) excellent essay from 1993, "Don't Mourn For Us". (http://web.syr.edu/~jisincla/dontmourn.htm) I've read this a couple of different times since Trey was diagnosed, and I find it really helpful for keeping my head on straight.

:)

cethklein
04-16-2008, 03:49 PM
I like to consider myself pretty tought when it comes to a lot of things, but I'll own up right now and say that seeing kids with autism is one of the most heartbreaking things I've experienced. So many of them have some of the most good-hearted attitudes despite their limitations, and I think the rest of us could learn a ton from that. I really wish that as a society we could understand more about autism than we do.

Someone once told me that autism "is not a disease or an illness but simply an alternative mental state." I think I believe that. I don't think it should be viewed as a disease. Those kids aren't ill, they're just different, and I think society needs to treat them on an equal footing as everyone else. I say this from experience as I know mroe than a few people autistic children.

Cranky
04-19-2008, 08:59 PM
Bumping with another request for information, lol! Anyone else here have (or know) a kid with a stim that involves someone else's hair? By that I mean, grabbing it and letting it drop, to watch the hair fall?

Trey's been doing this again, and quite frankly, my scalp hurts. He's pulled more than a few hairs out, and redirecting him is hard. I've been considering buying him a doll with long hair, to see if he would accept that substitute. I am not worried about anyone thinking it's weird that he plays with a doll, since he is willing to leave the house without toys of any kind, so this could be a strictly at-home thing. I'm also not willing to cut my hair over this, either.

Just wondering.

Cranky, whose scalp needs massaging, and in imminent danger of needing hair implants!

Jenan Mac
04-20-2008, 07:00 PM
Cranky, we haven't had that specific stim. But our rule has always been that the minute your stim affects other people, they get the right to tell you it has to stop. So if my daughter's pacing in her room...no big deal. If she's pacing in between her brother and his video game and making him use up lives or accidentally pulls the cord out of the controller, he has the right to tell her to move or knock it off. As the saying goes, "your right to swing your fist stops at my nose."
And actually, I'm a little stim-avoidant myself, so if it were my hair someone were grabbing, you betcha I'd be looking for alternatives. The doll sounds like a reasonable option.

By the way, when is Trey's FBA? Does he do the hair thing at school? If so, I'd consider throwing it open to the team, either for a second FBA and RTI (response to intervention), or less-formally just for brainstorming.

Cranky
04-20-2008, 07:09 PM
I wish I could reason with Trey like that. He's just too young at this point. Though I do take his hands and say, "Ouch! That hurts mommy. No more." and try to get him to do something else. If he complies, I go over the top with excitement/praise.

As far as an FBA, I have to wait a little bit. We're working with some different strategies we've brainstormed for now, but I have Gaby's IFSP meeting coming up, and I'm trying to get ready for that. I must admit, part of me hopes that it won't come to that. The aggression seems to have faded at school. He's still being aggressive with me, but I think that's because I'm his "safe" person. We're still going to have to try tracking this stuff, to find out what's going on that might be setting him off. :)

Thanks, Jenan!

Jenan Mac
04-20-2008, 07:15 PM
He's still being aggressive with me, but I think that's because I'm his "safe" person.

Well, yeah. He knows you won't kill him and eat him.:D

Somebody told me that once about why my older girls were always 10 times worse with me than any of their other grownups. I asked Abby about it later and she said "I wasn't too sure about you, either."

Cranky
04-20-2008, 07:19 PM
:D Kids. Ya gotta love 'em!

:roll:

Cranky
05-01-2008, 05:12 AM
I just wanted to thank Trey (III) again for starting this thread, and everyone who contributed to the discussion here.

Autism awareness month ends today, but autistic people and their families will still be around. We live it every day; the good, the bad, and the ordinary. :D

Trey, thanks again for giving us a place to get the word out...I appreciate it so much!

Haggis
05-01-2008, 05:15 AM
I just wanted to thank Trey (III) again for starting this thread, and everyone who contributed to the discussion here.

Autism awareness month ends today, but autistic people and their families will still be around. We live it every day; the good, the bad, and the ordinary. :D

Trey, thanks again for giving us a place to get the word out...I appreciate it so much!

Amen.