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Below are the 20 most recent journal entries recorded in Family of individuals affected by Autistic Spectru's LiveJournal:

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Wednesday, December 1st, 2010
6:37 pm
Those Stupid Questions
I made a video about those stupid questions that people ask me (and others). Stupid questions about my son.


How many of those questions or comments have you received? Do I have a looney magnet or are people just rude?
Friday, July 30th, 2010
1:49 am
Well How About That?
Padawan One finally graduated from High School Wednesday June 32rd. It's been a bumpy, uphill road, and we are doing summer School to tidy up English 12, but we're proud of him. Grandma even trekked up from Brooklyn to take in the ceremonies. I have to give HUGE credit to the infinite patience and compassion of the Special Ed folks at Birchwood School for all the work they've put in with him, most particularly his homeroom teacher and social worker. Pilamaye. Also big kudos should go the Cognitive Behavioral Therapist/Tutor, we dug up who's managed to get his writing thing unstuck. One of the few who had any clue what I was on about when I mention "cognitive dysgraphia." Non-trivial cost, but still in the WIN column.

Of course a sushi feast immediately followed.

So the next act. This afternoon, the school called and wants to schedule a CSE Exit Meeting, as Alex is finishing up and actually being graduated out of the Special Ed program. They said they could do it over the phone... but I kind of want to go in and do it in person. Put a cleaner "period" on that sentence in the guy's life, and shake a few hands. They did an awesome job pulling the kid back from the abyss of anxiety driven lockups and depression.

What we're doing in September? Who knows... but I am proud of the lad.


Current Mood: calm
Saturday, June 26th, 2010
8:02 am
The New Field of Neurodiversity: Why 'Disabilities' Are Essential to the Human Ecosystem
" Instead of celebrating the natural diversity inherent in human brains, too often we medicalize and pathologize those differences by saying, “Johnny has autism. Susie has a learning disability. Pete suffers from attention deficit hyperactivity disorder.”

Imagine if we did this with cultural distinctions (“People from Holland suffer from altitude deprivation syndrome”) or racial differences (“Eduardo has a pigmentation disorder because his skin isn’t white”). We’d be regarded as racists and nationalists. Yet, with respect to the human brain, this sort of thinking goes on all the time under the aegis of “objective” science."

Read on.
Monday, May 24th, 2010
6:34 pm
The usual SOS from NYC.
If your child has a medicaid "service coordinator" do they demand a PPD test from your child every 6-12 months? We're not happy with our coordinator for a thousand reasons but one of the reasons is they demand this and our son's pediatrician has had it. She says it's completely unnecessary at this point and she's refusing to put him through it again and again. To be honest, I agree with her. The medicaid coord is throwing a hissy naturally. Has anyone else been here? (I'm still fishing for a "better" service if one exists.) I'm in NYC, everything here is pretty insanely bad when it comes to services medicaid related and otherwise except for the stuff we pay out of pocket, (which is $$$$$$$.)

Anyone else been through this?

Tuesday, May 11th, 2010
5:18 pm
Could use some help here...
My son has PDD/NOS and is a high functioning autistic with OCD and turrets elements.

Eihab, (his current medicaid service coordination org) sent me a form demanding payment of $286.55 per month for their continued medicaid service coordination.  (This from the people who don't even know what my son's medicaid client identification number is, according to the form.)  
If I had 300 dollars a month I could afford to part with, my son probably would not need medicaid.  

My son's caseworker du jour is very pleasant, comes to the house once every 3 months and consistently answers all questions with "I'm sorry, I don't know."  As a medicaid service coordination provider eihab has not exactly sparkled. None of these MSC providers do.  I've had years of experience in this in New York City and they are all run pretty badly.

The form I received is not well written or clear at all. It does not even have much by way of proper grammar or punctuation.  One thing I did manage to glean was that failure to comply with the sudden demand for money would not cut off my son's scant medicaid services but he would no longer have a services coordinator, (and as you may know, the people one can actually get on the phone at medicaid in NYC are all morons who contradict each other at best.) 

So what any of this means to my son's medicaid coverage in the real world, God only knows.

Does anyone know of a marginally competent medicaid service coordination provider in New York City? Or have any helpful input? I could use it. Thanks.
Monday, January 18th, 2010
10:58 pm
Help and advice request
I have 2 kids ages 10 and 6 with asperger's. It is mild and probably 50% of kids like mine may be undiagnosed because it's so mild (I've been told). But they are very sensitive. I met a friend through my son's preschool social worker. She has 2 kids with autism. Yesterday we had her and her daughter over and we had an unfortunate incident.

Cut for boring long details and 1 appropriate word for the male anatomy but may offend anywaysCollapse )

Current Mood: tired
Thursday, November 19th, 2009
8:46 pm
Still woefully behind, but...
...I couldn't let this one get away from me without getting it down in a timely fashion. Jamie's been having a pretty rough week. It had been steadily improving towards not-as-really-bad, with yesterday being the best of the recent days, Jamie not having had any trouble spots, really, until almost 3pm (and that one a three-times-in-a-row problem with short-circuiting and failure to control the hitting reflex), and then only one more after that, at around 5:30, 6pm-ish (another of the same), which lead into a wind-down to a fairly decent bedtime. Today, though, was rather bad again. Nothing we haven't dealt with before, but still bad enough to make us go, "Wow," a few times. On the other hand, there was one rather outstanding positive. It was a little past 4pm when there was no getting around one of Jamie's 98% "possessed" autistic/sensory meltdowns, which lead us to attempt bathing him, lasted through the bath, and ended part-way through the rinsing shower. That caliber of meltdown usually lasts around 45 minutes, which this one did (though with a long stretch of bad-day lead-in), although usually the rest of an hour and a half goes into a cool-down and recovery period. This time that took only 5 minutes or so. Eniways, when Jamie was halfway toweled off, he said something about pee-pee and poops. I asked him if he wanted his diaper back on, or if he wanted to sit on the potty. (Chances slightly favor him picking whatever the second option is, in general, should all other things be equal, so we often propose our preferred option second.) He said he wanted to go downstairs and sit on the potty. (He's got a mini-potty chair in his room, we were next to a toilet...but it's the one downstairs that has the seat insert for little butts, and since we spend most of our time downstairs, that's the one most of our few willing potty attempts have been made on.) Ok then! So down we all marched together, Jamie still quite naked and thus also a bit cold, Keainid thinking about the fact that this whole dang place is carpeted, and wincing. We made it to the downstairs bathroom, I straightened out Jamie's seat and helped him on there (while Keainid turned the heat on in the bathroom)....and within maybe 30 seconds, he was peeing in the toilet. His hand was down there either to point himself down as I'd gone over with him before, or just because he was feeling a part of his body he was unusually aware of at the time, so he also peed on his hand, but thankfully I was able to clean that up before the hand went everywhere else. Impressively, there was only a little drip to clean up, otherwise. So let's review....he recognized that he needed to pee, he responded to the idea of using the potty, he expressed specific intentions regarding that activity, he HELD IT until he was on his intended potty, and then he peed in the toilet. HALLELUYAH! No, I'm not expecting smooth sailing through this breakthrough pass and into the sunset, but this is still a rather major first. This is the first intentional and successful use of the potty. (There was only one other successful use of the potty, and it was accidental on his part.) Naturally, we reinforced the occasion as best we could. He sat there a while longer, too (though he never did poop then, or the rest of his awake-time tonight), before telling me he was all done, sliding down, and waiting for help with his diaper.

Over the next two hours, I asked him a few times if he wanted/needed to go pee-pee in the potty. He -- thankfully without any triggered issues -- always rejected the idea. And when it came time for his bedtime diaper change, his diaper was very full of urine. Now, there are a lot of possible factors. He had a diaper and clothes on, and was covered and warm, instead of being naked, slightly wet, and a bit cold. He was back to being busy with his stuff, instead of being between major activities (bathtime, and going back downstairs). And of course, with his sensory issues, there's really no telling if he's going to be capable of these not-reflexive-yet recognitions and habits, from one moment to the next. All the same, and carpets be damned, tomorrow the heat might end up jacked up A LOT, and mommy might spend a lot of time slightly more bored than usual, as Jamie spends time as half-nakee-boy, and she intently watches the color of his penis.

I know, for a four and a half year old boy with ASD and SPD, not being potty trained yet is far from unheard of. But my, that'd be a nice Christmas present.
Saturday, October 31st, 2009
12:54 am
Beyond RainMan
The world's only known female, idential twin, autistic savants!  A fascinating, moving, and occasionally heartbreaking story about two very special human beings who like to call themselves human computers.
Friday, October 23rd, 2009
3:48 pm
A big relief, a bit of cute, and some handy product reviews.

We moved from the MidWest back to the NorthEast right around the time our son aged out of E.I.  Thanks to a truly impressive series of tangles and mobius-strip style hoops of red tape to jump through that were created by needing to apply for state-aid insurance (for our family) as well as fight for Disability (for myself), at the same time, it has taken almost a year and a half to finally even get set up with a PCP.  And that means, since nobody wanted to cover anything until there was a referral from a PCP (because E.I. in another state doesn't count for enough), that my son (SPD and PDD-NOS) has gone about a year and a half without receiving any services beyond what we can provide at home.  Well finally, yesterday, I was able to begin the process, with both the state/insurance and with the school-system, of getting him a formal, government-recognized diagnosis.  Once we have that, we should be able to get him therapy services again, possibly get him into some programs, and apply for Disability for him as well.  HALLELUYAH!

To follow that snippet of good news from yesterday, here's a snippet of cute ==>

::Jamie points to his PJ top after trying to twist his head around for a bit:: <i> "What does dat say?"</i>
::I point to the words that are upside-down to him::  <i> "It says 'Captain Heartbreaker', because you are so cute!"</i>
::Jamie looks concerned::  <i> "Can you fix it?"</i>

It's part typical-little-kid cuteness and part autistic literalism, I'm sure.  Totally adorable, regardless.

In other news, I have another Examiner article up.  It's a two-part one again, reviewing first spout guards and then tub bumpers.  It's written with parents of special-needs kids with movement-affecting disorders (autism among them), in mind, though of course it's relevant for any parent, or anyone who has a movement-affecting disorder (or just advanced age) themselves.  But yeah...Jamie definitely has that erratic movement issue, and the products I reviewed have made, I have no doubt, a HUGE difference in the number of baths that resulted in bruised lumps and bloody gouges.  We're a lot more relaxed, too.

Wednesday, October 14th, 2009
8:09 pm
Changing the image of disability, one candy bar at a time?
Interested in helping with a small effort to change the image of disability? Click here and my latest Examiner article will point you to a sweet little girl with Down Syndrome who is competing in a "The Face Of..." contest in the UK! I know this isn't ASD-specific, but I tend to think you have to get people to change how they think about disability in general before you can work on what they think about any specific disability.

Also, the contest relates to a UK-based chocolate that's designed with kids in mind, being both little-person-portioned and made with less actual chocolate, more in-theory-healthier milk-based filling. I admit I haven't investigated this (the chocolate) closely, since my attention was drawn to the girl in the contest, but it sounds l like something some of you in the UK might want to check out, if you haven't run into it yet, anyway. I know a lot of parents end up using special edible treats as incentive in some therapies, so... ::shrugs::
Tuesday, October 6th, 2009
3:10 pm
How you can help neuro-typical children interact with special-needs children...request for input!
Ok....I just finished a two-part Q/A article for my Special Needs Kids Examiner page, with part one here and part two here, dealing with the question of how you can help neuro-typical children interact with special-needs children. I'd really like to do a third part, though, following up with more ideas, specific experiences, insights, etc., from others who have felt responsible for thinking about this kind of thing. I'm particularly interested in hearing from parents with both NT and SN kids, because the article as written keeps things on a more basic level meant for, say, play dates. I'd probably keep it pretty much to quoting what people offer up, with as much personal info as you desire, to attribute the quotes to. If you've got a comment very directly related to what I already said in the articles, then I'd be thrilled (I hope) if you'd leave it there in the article's page itself...but if you're willing to offer your own advice to expand upon what I put there, please leave the comments here in LJ, so my Examiner page doesn't end up with the same content in several spots.

2:59 pm
I know kids in GENERAL are known for saying these kinds of things all the time, but...
Yesterday, Jamie told me that stars are flashlights in the sky.

Have you absorbed the adorableness from that yet? I haven't.

What makes this even better is that he has a very hard time processing language and expressing himself verbally. A lot of the speech at his disposal, even on his better days, is adapted echolalia. For him to come up with something like this, entirely on his own, is amazing, even within the wondrous realms of Jamie.

I wonder if the next time he sees a star twinkling, he'll tell me (that he's aware that) you shouldn't keep turning it on and off, you could break it.

(Cross-posted, because it's a little spark of joy.)
Sunday, October 4th, 2009
9:25 pm
Thought this might prove useful...
My friends at Stronghold's Old English Faire clued me in to C.T. Treats Custom Granola, which, aside from being yummy (and addictive enough to be nicknamed "granola crack"), provides an array of options with those who have to consider food allergies and intolerances, sensitivities to, say, artificial schtuff, or need a gluten-free diet. Considering the number of people I know for whom those are issues.....

If you'd like to learn all the highlights of the company all in one page, I did a feature article on them here.
Thursday, September 10th, 2009
2:43 am
New articles up (other updates pending)
Not all that long ago, I posted the link to my Examiner.com article about the inspiring abilities of the disabled. Well, I've got two more articles up -- really, one article in two parts. This one is about service animals, and how they are so much more than pets. (I'm by no means questioning the value of mets, merely seeking to educate a bit more about the wonders of service animals.) Here is part one, and here is part two. Although I am "reporting" from the perspective of a parent of a special-needs child, I admit that getting the article written was inspired not by my own experiences -- although I've no doubt my SPD/PDD-NOS son would benefit from a therapy dog, we are not in the position to have one -- but by an adult friend of ours who has a seizure alert/response chihuahua. Nixie is, as she puts it, "[her] best friend, [her] child, more important than any romance....she is [her] freedom to live as [her] true self." Now who wouldn't want that kind of chance for their child?!

By the by, Examiner has me theoretically "reporting" from NY, since I have the most experience with that state, and they like to try localizing people's knowledge base. You might notice, however, that adds come up on the sidebars which seem to indicate that I am located wherever you are. I've gotten a number of comments from people who were confused by that. Don't worry over it -- that's just Examiner.com trying to better match their sponsor companies to their viewing audience.
Saturday, September 5th, 2009
1:02 am
New "Special Needs Kids Examiner" article up!
I have another Examiner.com article up, called "The inspiring abilities of the disabled". Fair warning, it's a tear-jerker....but in a good way. Seriously, we all need to cry about stuff like THAT, more often!
Wednesday, January 14th, 2009
12:21 pm
Questions About My Daughter
Hello, I'm new here, and am looking for advice and suggestions.

My daughter, 6 years old (The Girl as I refer to her in LJ posts) has not been diagnosed with anything, but her teacher thinks there might be some flags that hint at high functioning autism/aspergers or something in the autism spectrum.

Here's my story:

The Girl, can be the sweetest, kindest, most loving and affectionate child around. She has a great imagination and can go off in the corner, or her bedroom and play the most wonderful made up games. She dances around the house and sings. She loves making things -- arts and crafts and the like. The Girl is good at math and likes it (she inherited that from some distant corner of the gene pool because that's a gift DH and I don't have).

Read more...Collapse )
Friday, November 14th, 2008
12:36 pm
hello everyone :)
my younger brother (13) was just diagnosed with asperger's syndrome after a very rough two years of testing, counseling, etc.
i love him very much, and i'd like to help him as much as possible. but i know virtually NOTHING about his situation save for what i've looked up online.
my mother knows a bit more than i do since she has been dealing directly with his doctors, but she is trying to find some really good books that she can read to help her learn more.
do you have any recommendations of books i could purchase for her?
thank you so much for your help in advance, i really appreciate it.
Tuesday, November 11th, 2008
2:20 pm
Introduction and questions
Hi. I'm new here (obviously). I a 55 year old mother of a son who I strongly believe has asperger's syndrome. He is 26 years old and still lives at home with me. He has a sister who is 15 months younger than him. She has been "out of the nest" for about 6 or 7 years and married for 4 years.

My husband and I both suspected for many years that something was wrong. After we saw Rain Man we kept saying that it reminded us a lot of our son.

We didn't know about Asperger's though. My husband passed away in 1999.

Anyway- I'm rambling. My question is: How do I go about getting my son tested? I don't think my son even knows he has it or may have it. How do I approach him about getting tested?
He's very intelligent (he was the valedictorian at his high school graduation) but seems to lack "common sense" about some things. He's not too good mechanically. Also (as I have heard/ read) his social skills aren't the greatest.

We live in Dayton, Ohio if that helps any.

Who do I/we see? How do I go about all this? Many thanks.
Saturday, September 6th, 2008
8:01 am
I'm Risa. I have a 7 year old son Ethan who has autism. He's in the second grade (full inclusion). I also have a younger son Noah (5) who is not on the spectrum. We're in northern California.

A few years ago I wanted to blog about my experiences and made a website
The Autism Blog. I put up a lot of info, but didn't do too much blogging b/c of the format. So I moved the "Blog" portion here to LJ and hope to update more frequently (weekly?). Anyway.... you're welcome to friend me if you'd like to follow along, discuss, ask questions.

Tuesday, September 2nd, 2008
11:17 am
Idaho Special Education
My family is seriously considering moving to Boise, ID early next year. One of our biggest concerns is what special education will be like there. I've heard so many IEP horror stories but here in Los Angeles we've had a fairly easy time of it with our Asperger's son. I'm just wondering if anyone knows anything about special education in Idaho or if you have a direction to point me in for info.
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