My Struggle with Autism

I do not have autism but I have two children that do. I have not been able to visit the Daily Kos recently because of some major battles I have been having with my new Democratic Governor, Ted Strickland of Ohio, and his administration. In 2006, I worked hard on his campaign. I wrote letters, typed registrants names on spreadsheets, cut fliers, stuffed envelopes, walked door to door with my two children. My motives were many fold. I wanted to defeat Kenneth Blackwell. I was so ready to finally have a democratic governor. I mistakenly thought he would finally help us parents that are raising children with autism. Instead, we get this.

The Ohio Department of Jobs and Family Services (ODJFS) and the Ohio Department of Mental Retardation and other disabilities (ODMRDD) proposed new rule changes that would eliminate medicaid funding for services related to autism. The rules were brought up to the JCARR committee on Feb. 19th and they passed. Here is a picture of me preparing testimony for the hearing.

Well, the parents lost that day. For those that are not aware, the most successful treatment for children with autism is Early Intensive Behavioural Intervention (EIBI) aka ABA. The problem with this treatment is that it is extremely expensive. It involves behaviour technicians to work with children 1:1 for 35 to 40 hours per week. The costs do go down eventually when the child progesses. It also needs to be overseen by a psychologist and every child needs case management to write the programs, review the programs, etc. The cost for a decent program can be anywhere from $60k to $90k for the first year. In Ohio, we have what is called an autism scholarship (ASP) in which we can waive services from our local school district and use that money ($20k) to apply towards this treatment. However, it still leaves the parent with a bill of $40k to $70k per year.

Many states have a standard formula. The children are cared for by the department of education until they are 21 using IDEA and FAPE. When they reach 21, their local county MRDD takes over in helping the parents find an institution for their child or provides waivers in which the parents waive the right to an institution and receive money to care for their children at home.

Every state has special education classes but very few offer the EIBI services that are necessary to help children get a start on life. Instead, they offer the traditional speech, occupational and physical therapy.

This is so frustrating because many children with autism are slipping by every day. I feel so bad for parents that find out that their two year old has autism and they know that the only treatment that has been scientifically proven to be successful is out of reach because of the large costs. Many states, like my own, are trying to pass autism parity bills which will force insurance companies to pay for these treatments. However, how can we force private insurance companies to pay when our own medicaid will not?

Please try to help me come up with solutions so that every child that needs treatment, will get it.  

•  Tip Jar.

  If you can't come up with any ideas.

  by franziskaner on Thu Feb 21, 2008 at 11:37:44 AM PDT

  •  I fully support the idea

    that we as a society should fund intensive therapies such as ABA for parents who desire it. We did not believe that approach to be beneficial for our own child, though. In fact, we believed it would have been detrimental, if not disastrous.

    by elmo on Thu Feb 21, 2008 at 11:46:13 AM PDT

    •  Why did you find that ABA/EIBI

      would have been disastrous for your own child? I am giving you a tip for the sentence that you believe society should fund intensive therapies for those parents that desire it. What approaches have you taken?

      by franziskaner on Thu Feb 21, 2008 at 11:48:44 AM PDT

      •  My daughter's 16 now

        so things probably have changed dramatically since she was little. But back then, when we discovered she was on the autistic spectrum, ABA therapies were intrusive (to say the least), involving compulsory compliance. Some programs even used "aversives," and techniques such as keeping a child in her seat by pinning her to the wall with a semi-circular shaped table.

        My young child was happy, responsive and  cooperative (within reason). However, I was not asking her to do the sort of things that an ABA program would have required her to do. I feared that compelling or forcing her to comply could make her retreat, rather than progress. She was always independent minded.

        We followed her lead, modeled behavior we wanted to encourage (such as flexibility), focussed on providing pleasureable interactions, etc. And we just kept at these things as she matured. In philosophy, I suppose you'd say we resemble the Sonlight folks, although we didn't do any formal program like that, either.

        I did not want to teach her that social interactions were unpleasant -- which is what I judged the ABA therapy (itself a social interaction) would be for her. I never compelled, but tried to motivate her using everything I knew about her likes and dislikes. Back in those old days, the ABA programs probably were geared for the more severely autistic child, too. Since my child was responding to "softer" methods, ABA therapy just seemed inappropriate for her.

        by elmo on Thu Feb 21, 2008 at 12:32:07 PM PDT

        •  You never use intrusive

          or compulsory compliance in ABA. That is a big NO NO. Children with autism do not connect a bad or negative behaviour with any form of punishment. Instead, we concentrate on rewarding children for positive behaviours. The difficult part is finding positive reinforcements for the children. With typical kids, it is easy because they like toys, movies, anything. With my kids, we have to do piggy back rides, a minute on the trampoline, usually physical things. They were able to use a point system eventually where they can go to the pool or buy a LEGO sets.

          by franziskaner on Thu Feb 21, 2008 at 12:37:41 PM PDT

          •  that's very good they moved away

            from the compulsory approach as well as aversives...because of course negative conditioning can be an even stronger reinforcement of behavior than postive reinforcement.

            I guess I still fundamentally have issues with the idea of non-intrinsic rewards. Of course, it certainly depends on what you're trying to teach. I sure handed out billions of "potty presents" when I was trying to get Hanna to let go of her diapers.

            It's social skills that I think should, ideally, be taught without the use of non-intrinic rewards. But, I'm a big believer in trying different things and going with what works with a particular child.

            by elmo on Thu Feb 21, 2008 at 01:00:30 PM PDT

            •  Having two children with autism

              it is amazing how DIFFERENT they are. What works with one kid does not work so well with the other. My kids are 7 and 9 and still way behind on the social skills. Please keep in mind that they had no language until having therapy at 5 and 7. They both speak in complete sentences now and Alex has playmates that come over several times a week. Matthew does join in sometimes but I really do not have much hope of him ever being social. Especially now.

              by franziskaner on Thu Feb 21, 2008 at 01:15:30 PM PDT

              •  My daughter had no words

                until she was almost 4, and didn't speak communicatively until she was 7. She struggled for years with reversed prounous, echolalia, you name it. Now at 16, all of that has worked itself out, although she still asks repetitive questions sometimes.

                About the hope thing, hang in there. You never know! It helps me not to think too far in the future, but just to focus on the next small goal. Now, when I look back on how far we've come in 16 years, it's pretty damn amazing. We have a long way to go for her to get to the point of independence, but I have hope that we'll get there one day.

                by elmo on Thu Feb 21, 2008 at 04:45:02 PM PDT

•   book rec

  I'm reading a good book on Autism called "Unstrange Minds" by Roy Richard Grinker. Thought you might be interested.

  by Virginia mom on Thu Feb 21, 2008 at 11:39:15 AM PDT

  •  It's an excellent book...

    The author (an anthropologist, I believe? who has a daughter with autism) makes a solid argument that the heart of the autism epidemic has to do with how autism definitions have changed.  The book also gave me the term "Elvis sighting" to describe those moments when my daughter says a new word out of the blue, clear as a bell - and then never says it again.

    by AnnieJo on Thu Feb 21, 2008 at 12:20:06 PM PDT

    •  I will have to check it out.

      Perhaps I can find it at my local library. I don't know whether it is an epidemic or not. To be honest, I never really thought about autism until my kids had it. What I am more worried about are the number of children that will not be able to function as adults (will they have to rely on us parents or be institutionalized). In my county, the number of people that require MRDD services have grown from 4k in the 90's to 15k. This has put a major stress on MRDD and that is why many adults are still waiting for services.

      by franziskaner on Thu Feb 21, 2008 at 12:27:34 PM PDT

•  My nephew has Autism

  And it is so tough on the family and everyone involved to have this kid where the kid is bright but the brain just works so fundamentally differently that communication is often impossible. And this is in a higher functioning case.

  And more and more kids are being born with it. I sincerely hope we one day find the cause, and one day find the cure. My family is very fortunate to live in an area with some decent autism programs.

  by greatn on Thu Feb 21, 2008 at 11:39:18 AM PDT

  •  Where does he live?

    What kind of services does your nephew receive?

    by franziskaner on Thu Feb 21, 2008 at 11:41:24 AM PDT

    •  Alabama

      Currently in the Auburn area, I believe he has speech training and social training he attends more than once a week, and is given special care in the schools there which apparently have an autism program. He's slowly being reintegrated into normal classes, though a few grades behind.

      I don't know a lot about the services he receives, and unfortunately due to a recent family split I don't know much about the new place he is, I haven't been there to see him.

      by greatn on Thu Feb 21, 2008 at 11:50:05 AM PDT

      •  Alabama?

        I am rather shocked. Sorry but I have this prejudice that some states in certain areas are rather backwards when it comes to providing services for the most vulnerable. I know several people that actually moved from certain states in order to receive better services. We have one family here from Arkansas but most of them go to New Jersey and now Pennsylvania.

        My children are now in a special needs class in public schools and my youngest is taking reading, math, art, gym and music with his typical peers in first grade. However, he has been moved back to Kindergarten math and he is failing in reading as well. I am trying to come up with a program at home so he can catch up.

        by franziskaner on Thu Feb 21, 2008 at 11:56:49 AM PDT

        •  try reading together

          Taking turns, sentence by sentence, then later paragraph by paragraph. That's one of the most useful things Hanna and I did together.

          I'd stop after each segment and get her to paraphrase what she or I had just read, and then later I'd ask discussion type questions. Really helped with reading comprehension.

          The only problem was she got so used to reading together out loud that she had trouble with the concept of reading silently by herself.

          So I subscribed to Bird Talk magazine (she adores everything to do with the subject of birds) and then was "too busy" to read the magazines with her when each one arrived.

          by elmo on Thu Feb 21, 2008 at 12:38:26 PM PDT

•  Your children are beautiful!

  I applaud you for your efforts in tackling this difficult problem.  My dear fried has a 9 year old daughter with autism, and I have been by her side through the years with her struggles.  She has told me more than once that she feels like she is "the principal of a school with one child".  I see her axhaustion, and frustration and the toll this takes on her and her family.

  But like you, she keeps advocating, with others and by herself.  I think the only thing that will get this addressed is when autism get the attention that AIDS and cancer gets.  When it becomes a polical touchpoint for the masses, then maybe it can be addressed.  In the meantime, I think, keep posting your story in every public forum that you can.  I am starting to see this issue in the MSM more and more every day.

  by calgirl on Thu Feb 21, 2008 at 11:49:33 AM PDT

  •  Thanks Calgirl!

    They are adorable. They just aren't so adorable when they climb up on tables, stoves, counters and bite me.

    by franziskaner on Thu Feb 21, 2008 at 11:57:55 AM PDT

    •  have you been visiting my house? :-)

      Both the climbing and the biting have been bad here lately (cabin fever maybe? This winter is SOOO long.)  I take my metaphorical hat off to you, for surviving it x2.

      by AnnieJo on Thu Feb 21, 2008 at 12:09:25 PM PDT

      •  We go swimming at the YMCA

        

        by franziskaner on Thu Feb 21, 2008 at 12:15:50 PM PDT

•  Contact Richard Durbin's office

  He's introduced lots of Autism support bills over the years. I think he may even have family member on the spectrum, but, I'm not sure. Anyway, they might be able to help.

  by Grassroots Mom on Thu Feb 21, 2008 at 11:49:44 AM PDT

  •  I will do that right now!

    Thank you!

    by franziskaner on Thu Feb 21, 2008 at 11:58:37 AM PDT

•  That

  is so sad what your state has done.
  My twin grandsons are autistic and recieve 35 hours a week of 1:1 intensive therapy each. They are also in a reseach study for autistic children.
  They are doing so much better but it was a fight to get them both in. For some reason the school district wanted to only qualify 1 of them for services and just place the other in special Ed.
  A money issue I am sure.
  I wish you luck with your fight with the state, I also fear that here in CA we will soon be having the same problem since our state has overspent the budget for years and depended on borrowing.

  by J Rae on Thu Feb 21, 2008 at 12:00:23 PM PDT

•  I have one on the spectrum. Possibly two...

  Our second is a bit young for a diagnosis, but his behavior raises enough questions to warrant one later this year. Insurance covers some of our son's therapy, but pay out of pocket for much of it (we are lucky that we do well enough to hack it... just barely...)

  But without question, Autism should definitely be covered 100% by the state. We have an epidemic on our hands, with the recent explosion in diagnoses, and it is for the common good that these kids get lots of help as early as possible.

  I'll contribute more when I have more time. But I fully understand your frustration. Special needs families need help, not hurdles.

  by chicago DEM on Thu Feb 21, 2008 at 12:02:50 PM PDT

•  This makes me angry.

  This is just another example of how this country is still run like an aristocracy.  It's disgusting.

  by AntonBursch on Thu Feb 21, 2008 at 12:05:59 PM PDT

•  oh my... what a blow!

  I'm in one of the states where the autism-insurance parity battle is raging (Wisconsin) -- state senate vote looks like it's coming up soon.

  I wish I knew what to tell you.  I have a 3 1/2-year-old child with an autism diagnosis, and have been in the awful position of working the Birth-to-Three / IDEA patchwork while we creep toward the top of the waiting list for state-funded intensive services.  (At least we'll get them eventually -- but to have to wait and wait for treatment that everyone admits is most effective the earlier one starts!!)

  When I dream big, I dream of a nationwide single-payer health care approach that would cover it all, not just ABA but also the relationship-based intensive therapies too.  But that single-payer would have to COVER it...

  Big hugs to you and your children.  

  by AnnieJo on Thu Feb 21, 2008 at 12:06:48 PM PDT

  •  That is a major problem.

    This children need services when they are diagnosed. Instead, we battle for anything we can get our hands on and we are put on waiting lists for years. My county still has ADULTS on waiting lists. Almost every county in Ohio has adults on waiting lists for services.

    I have heard about Wisconsin but I am still in the dark. I need to read up on it. I heard that Cleveland (here in Ohio) made up a deal in which the school district actually pays up to $65k per year for each child to get full time 1:1 ABA. I cannot find a link so I will not believe it until I see it in writing.

    by franziskaner on Thu Feb 21, 2008 at 12:20:17 PM PDT

    •  the rumored Cleveland deal does sound very rosy..

      Where in the world would the money be coming from?  What a nice model, if they could make it appear out of nowhere.

      Short version of Wisconsin:

      Wisconsin does have a deal whereby state Medicaid funding can be used for intensive one-on-one services for kids with autism even if you wouldn't otherwise qualify for Medicaid (up to 3 years intensive, then some additional post-intensive services). It was an amazing program for the first few years.  Then the waiting list began to grow and the funding has not kept up.  The state had been offering treatment to 250 new children per year, and the waiting list was growing.  This budget cycle, the funding only covers 200 new children per year.  The proposed budget plan had it that the difference was to be made up in insurance coverage.  Well, the insurance provision got axed from the state budget at the last minute (thanks a bunch for caving in, Gov. Doyle), so now we're trying to pass it legislatively.  The Wisconsin Senate will pass it; the Assembly is Republican led and things are not looking good there.

      My daughter was diagnosed in December of 06.  We got onto the list last April, and will likely receive services starting mid-summer.  Those kids getting on the list just now face a much longer wait.

      by AnnieJo on Thu Feb 21, 2008 at 12:34:06 PM PDT

      •  So you have to wait a year and half

        to get services. What is really sad is that you are lucky in the sense that you will get services for you daughter but what a waste it has to be so late.

        I guess the Cleveland schools have to pay for the services. What is really strange is that the Ohio Department of Education cut special ed funding by $73 million dollars last year. We could have used that money to fund services for probably all children that need it.

        by franziskaner on Thu Feb 21, 2008 at 12:47:21 PM PDT

•  I'd be just as happy if the gov't

  would keep the damn money they want to send us all, and fully fund even ONE good social program like this.

  What a battle for you.  We have a friend whose sister has two children with autism.  Like you, she has worked very hard to gain better access to health and educational tools for her children and children like hers.  Sometimes it seems like one step forward and three steps back.  So frustrating.

  by Pandoras Box on Thu Feb 21, 2008 at 12:10:20 PM PDT

  •  So true

    and just think we are spending $275 million dollars per day on Iraq. Just think of the number of children that could be receiving treatment with that money.

    by franziskaner on Thu Feb 21, 2008 at 12:21:17 PM PDT

•  Hefeweizen

  I just read an amazing article from ABC about autism.

  Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.

  "All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash. "It was one of those moments in my career that I'll never forget."

  Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.

  "It feels like my legs are on first and a million ants are crawling up my arms," Carly said through the computer.

  The article gave me chills. I'm sure you'll feel them too.

  by Oreo on Thu Feb 21, 2008 at 12:21:28 PM PDT

  •  I will give you a tip

    for calling me Hefeweizen. I really need a beer now.

    However, I don't really know that much about this story. Is she using a facilitator? I don't believe in that and it has been proven over and over again that it does not work. If she doesn't, well maybe there is something there.

    by franziskaner on Thu Feb 21, 2008 at 12:30:30 PM PDT

  •  yes

    Sensory issues associated with autism are not well understood by many people. A mother on an list for people homeschooling their autistic spectrum children once wrote that her daughter was behaving perfectly normal for a person who perceives the world the way she does...it's just that her sensory perceptions are different.

    They test the emergency siren warning system here at noon once a month. Hanna can hear the siren beginning about a full ten seconds before my ears can pick it up.

    by elmo on Thu Feb 21, 2008 at 12:43:19 PM PDT

    •  Sensory Issues

      That is a major problem for my children. Matthew loves the pool but he has to cover his ears when he gets in there. Well, at the YMCA. It is too crowded and too loud. He hates sirens, lawn movers, vacumn cleaners, etc. He never eats lunch at school because the cafeteria is too loud for him.

      by franziskaner on Thu Feb 21, 2008 at 12:50:48 PM PDT

      •  I'm with Matthew

        about crowd noise. Can't stand it. I keep earplugs in my purse.

        Now, my daughter Hanna doesn't mind that kind of noise, but low register sounds (like a chain saw) really bother her. She can tell if anyone is trimming trees in our zip code (practically).

        by elmo on Thu Feb 21, 2008 at 12:53:29 PM PDT

•  I was saddened to notice

  When I saw a posting somewhere about the filing date having closed in Texas, that Republican Congressman Joe Barton, TX-06, who hates autistic kids and is credited (if that's the right word) with single-handedly blocking legislation to help them, gets a free pass in the 2008 cycle. No Democrat filed to run against him, this time.

  by Christopher Walker on Thu Feb 21, 2008 at 12:24:39 PM PDT

  •  You have got to be kidding!

    Didn't we have someone run against him in '06? What the heck is going on down there?

    by franziskaner on Thu Feb 21, 2008 at 12:31:42 PM PDT

    •  we did

      And I thought he was a terrific candidate, David Harris. But he was not a self-funding millionaire; he was a regular working guy, and he can't do it again this cycle. The DCCC never funded him because the incumbent was so entrenched they thought the district  was hopeless. Joe Barton is the voice of Big Oil, in Congress.

      by Christopher Walker on Thu Feb 21, 2008 at 01:23:49 PM PDT

      •  I don't know if you will read this

        but how close was he in '06 ? Just curious.

        by franziskaner on Thu Feb 21, 2008 at 02:08:35 PM PDT

        •  I don't have that figure handy

          But the incumbent stomped the Democrat. Barton spent $ 2.3 million in the 2006 cycle; Harris raised less than 2% of that sum, much of it on ActBlue, from small donors.

          by Christopher Walker on Thu Feb 21, 2008 at 02:14:06 PM PDT

          •  Oh dear.

            I guess that is why he didn't run.

            by franziskaner on Thu Feb 21, 2008 at 02:19:11 PM PDT

            •  yes, that, plus

              he had to continue working a 40-hour a week job while running for Congress.

              He was one of the unsung heroes of the 2006 cycle, if you ask me.

              by Christopher Walker on Thu Feb 21, 2008 at 02:21:13 PM PDT

•  Do you have a link for your premise that

  Early Intensive Behavioral Intervention (EIBA) is the "only method of autism treatment that has been scientifically proven to be successful?"

  This in of itself is an extremely controversial statement.

  I know that in teaching behaviors, there is never, ever a technique that works 100% of the time for every situation.  Because we have several excellent writers on this site, who write about autism frequently, and have never made this assertation, I quickly looked around the web and found this.
  http://www.ttac.odu.edu/...

  quote:

     Discrete trial training (note: this is what "EIBA" is) is possibly the most structured and invasive behavioral intervention. It generally focuses on repetitive practice presented in blocks of time for 5-6 hours each day.A discrete trial involves the presentation of a discriminative stimulus, Sd (e.g., sit down), a response opportunity (during which the child either sits or doesn’t sit), and a stimulus reinforcer (e.g., a sticker) provided by a teacher or device (e.g., a computer) to a student. The trial is discrete because its presentation is other controlled rather than learner controlled (incidental learning is a learner controlled tactic). The discriminative stimulus is the antecedent, which evokes the behavior that is followed by a consequence (reinforcement). Each response is recorded on a data sheet before continuing to the next trial, thereby engendering its discrete nature.
  ... /snip

      In a study attempting to replicate the results of the EIBI project Smith, Groen, & Wynn (2000) endeavored to correct for the above-described criticisms of Lovaas’s research. However, this study did not replicate Lovaas’s results as hoped; only 13.3% of children achieved the “best outcomes” of normal IQ and placement in general education settings without special education services (Lovaas reported 47% in this category).

  In other words, even the person who invented (and I hate to say that, rather, tried applying this form of behavior modification to these ASD children) only had a 47% success rate, when others tried to duplicate his results, the results were only 13.3% good.

  35 to 40 hours of one on one intensive stimulus/ response/  reward behavior therapy, for a period of years,  before any sort of positive response could be noted or expected,  is an extraordinary amount of conditioning to be applied to any sort of living being.  

  I am not saying that earlier therapy is not good.
  I am not saying Medicaid cuts aren't despicable.
  I am saying that if you make the claim that you've found the "only" solution that "works" with such a condition as autism,  you're going to get shot down rather quickly by people other than me.

  by AmericanRiverCanyon on Thu Feb 21, 2008 at 01:14:58 PM PDT

  •  Great.

    You got me. I will have to reword it. Yes, some kids make do on floor therapy, play therapy, social skills therapy, speech therapy, occupational therapy, physical therapy, ergotherapy, diets, immunotherapy, viral therapy, chelation etc. etc. Some parents claim these therapies have helped or even cured their kids. However, my children's psychologist and developmental pediatrician have told me that ABA would produce the best results for my children. I was skeptical but they were right. My kids had speech, play, ergo and got nowhere fast. After one year of ABA, my youngest had an IQ increase of 16 points and my oldest had his IQ raise 5 points (not much) but both of their verbal skills improved remarkably. They were both non-verbal. ABA is not a cure. There are no miracle cures for autism. It is the best method we have at this point. If we can come up with a better method, great. Yeh, if ABA is not working after a year or two, I would suggest to the parent to move on and try something else. My kids needed 1:1 for the first year at 35 hours per week but that decreased to 15 during the second year.

    by franziskaner on Thu Feb 21, 2008 at 02:07:30 PM PDT

•  Our daughter is ASD

  I feel for you.

  She's 10.  We live in a small town in Vermont, and the school is very good, for typical kids.  But for Special needs, they just don't have the resources.  They've done a good job with what they have.  Vermont is good as far as respite-care, etc.   And she's covered through their excellent medical-care for kids (Dr. Dinasaur).

  Our team meetings are sometimes contentious, and always disappointing, though.  The schools need federal help (no child left behind, my ass, George!)

  I just found out that Barack Obama actually has worked in Illinois to bring about help for our ASD friends there.  He's even got a national plan!!  Reason number 87 why I'm voting for him.

  by AlyoshaKaramazov on Thu Feb 21, 2008 at 01:31:03 PM PDT

  •  from his plan

    Fully Fund the Combating Autism Act and Federal Autism Research Initiatives: Barack Obama supported the Combating Autism Act of 2006, which was signed into law in December 2006. The Combating Autism Act authorizes increased federal funding for ASD research and efforts to boost public awareness and early diagnosis of ASD. Since the bill has been enacted, however, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act. As a U.S. Senator, Obama has worked to fully fund the Combating Autism Act and as president, he will ensure that his administration addresses the growing impact of ASD and other special needs on American families. President Obama will fully fund the Combating Autism Act, which provides nearly $1 billion in autism-related funding over 5 years, and work with Congress, parents and ASD experts to determine how to further improve federal and state programs.

    by AlyoshaKaramazov on Thu Feb 21, 2008 at 01:34:26 PM PDT

•  Just wanted to add...........

  Autistic kids are beautiful.  We've had friends who barely know how to act around our daughter.  But, when these friends come to visit for an extended period of time, and live with us, our daughter blossoms for them right before their eyes.

  It's always wonderful to watch them catch on to the beauty WE see in her every day.

  Our daughter is a healer.  For those who are on her frequency.......who can slow down and take the time to get to know her, she's a great teacher.  An old soul.

  
  
  
  

  
  
  Yes, she climbed up there on her own.  In her bare feet.

  by AlyoshaKaramazov on Thu Feb 21, 2008 at 01:45:27 PM PDT

  •  I love that picture

    but I would be scared to death to have my kids climb that. I am sure they would do well. They are great climbers. But I also fear them falling. Where was that taken at?

    by franziskaner on Thu Feb 21, 2008 at 03:04:46 PM PDT

    •  in Maine

      on an island, last summer.  Actually, she climbed up the left side of that rock, which was MUCH less steep.  I just thought it was an awesome picture.

      Still, if we don't let them try, they don't get to live.  And casts are great for signing!!

      by AlyoshaKaramazov on Thu Feb 21, 2008 at 08:05:34 PM PDT

•  Helping autistic Kids

  i started working with autistic youngsters back in 1955, not long after leo kanner first described the condition. I've had some professional involvement with it ever since. We did some heroic things. I once spent a month in total body contact with a child 24/7/.
     Frankly, i think you need to organize a parent's collective. What helps best is lots of love, stimulation, and attention.  I once helped a family which a child who was mute at 6 who went on to become a university professor. I don't think these fancy psychological theories help much. if i was going to get a consultant it would be Oliver sacks.

  by arion on Thu Feb 21, 2008 at 01:59:48 PM PDT