Re: Some AU studies make you feel bad.

March 4, 2010

From:autisticcrystal@...Subject:Re: Re: Some AU studies make you feel bad.Date:March 4, 2010 11:12:37 AM ESTTo:deniseslist we'v do attachment parenting and floortime, hippotherapy, swimming with dolphins, and supplements and DAN protocols, and our child is still severely autistic and completely non verbal so it hits us alot when articles like these come out. because we DID try everything with very little effect for our efforts. i've quit my job as a dog groomer and have a full time nurse and our lives are made up of orbitting 24/7 around her, we are at her beck and call and even then we're still doggedly at her. she is only better in the face that she became more interactive which compared to others isn't visibly much at all, just that we are a little less invisible some of the time than COMPLETELY invisible ALL of the time.puberty struck and it seems like the years of investment we spent were for the crumbs tossed our way was nothing more than a tease as she's gone back to an unreachable stage in another regression and just to add on to all of that; frightful aggressions. any how we're off to shave her head as she's spent this week ripping out bloody clumps of hair from her head. i've suffered black eyes and a misscarriage from a kick from her so i have nothing else but her to wrap my life around, which i do. i breathe and live every waking moment for her and for her alone.so this article and study hit us very hard, because no matter what we did we can barely move through the surface. and people don't have the time and energy to do what we do. i don't even sleep with my husband. haven't in more than ten years. He even left us due to the neglect he suffered because i was so wrapped up 24/7 with her and i have not slept a full night EVER in the past thirteen years, so i barely noticed he was gone for two years that he left. there isn't more that we could have done. at least i suffered a breakdown from caregiver burnout and due to a misscarriage and depression and have help now. Our therapist stated we needed a date night as we hadn't had any such thing in over five years. so we planned on it but a day of back to back seizures and our date night was spent in ER with Diastat for the recurrent seizures. so much for our date night... we fired our therapist when she suggested to keep trying because we can't even have time for her even and my husband may leave again and i'll understand but i will continue to do whatever else comes up to try to make things better for her even though evrything else we tried in the past thirteen years has failed. so whatever the article says was beyond hurtful. as everyone who knows us knows that my sensitivity to my child is as if we were one person connected as if still an umbilical cord were still attached.this has been a very pressing months of dealing with puberty which left us feeling like being stuck in an episode of the Exorcist and having had to cancel therapies because of her issues and sleeping 2 hour nights and napping whenever possible and then this article was just too much to bare. so i just deleted it and would rather not hear of folks attempting to justify the study unless they include my family in the study. my sister also has quite her job, her marriage failed, and she is raising her kids alone and on public assistance, cosleeps with them and is devoted and sensitive to her kids as she devotes her days and nights to her kids and only one has shown progress and even then it seems he would have gotten there anyhow but no matter what she has done the other two (which btw her last autistic child is also completely vaccine free and organic fed and gf and cf free and is still autistic, the whole vaccine controversy leaves little comfort to those who have vaccine free kids who are still autistic) and they are still lost to her and no matter how many years or whatever she tried (before she went bankrupt and lost everything, home, money, savings, and husband and live in a tiny mobile home now) things have not gotten much better for her either. her other child with PDD-Nos has also been recently labeled as MR instead of the former learning disabled label because she's just stagnanted in the same place for years now, the youngest (vaccine free is HFA and Bipolar. the only thing she got from her efforts was one child going from classic autism to higher functioning autism. so we recoil at such studies because we've also seen folks who have not done what we have done and still their kids emerge in ways our kids could not. my sister doesn't even flich when folks recommend stuff to her she just answers 'been there and done ALL of that.' Re: Some AU studies make you feel bad.>> To: sList@ yahoogroups. com>> Date: Friday, February 26, 2010, 3:12 PM>>>>>> Don't let it, please don't! I have a story to share with you.>>>> We decided to participate in the UM study because we've always >> believed that, for professionals of the health sciences to >> understand autism, well controlled studies must be done. We think >> what UM is doing is significant for autism research. The first >> articles I read on the early signs of autism in infants blew my >> mind. However, I'm really surprised over this particular one. They >> really missed the mark.>>>> Our family participated in this study, although originally we were >> recruited for the study of early signs of autism in infants. My >> youngest son's development has been followed since he was four >> months old.>>>> However...when I read the article I realized that data from our >> visits could have been used for this study also, because at 18, 24, >> 30 months, was asked to 'play as I would do at home', just as it >> details here.>>>> And I will tell you this: as much love and connection I have with >> my boys, many of those sessions I did with the little one when we >> went to UM, I was tired. Back in those days, my oldest child could >> keep me up at night for days. And then I had to go about whatever >> the next day would bring. Most of that period of time is blurry in >> my mind- I was THAT exhausted.>>>> I wonder how many mothers that participated in this study went >> through the same thing? I remember the researcher would ask what >> kind of day my child was having, whether he slept or not the night >> before, if he was in a good mood, etc. But they never asked what >> kind of day I had!!!>>>> As you said: we're human!>>>> How do can 'mother sensitivity' be measured by just rolling a video >> and not really knowing whether external factors are influencing >> what you're capturing on camera?>>>> And how did they reach this conclusion without seeing the day to >> day in a natural setting (hint: the home), rather than in a >> university lab visit for a few hours? Did they visit the homes of >> the children in the study? Because they certainly didn't visit ours.>>>> My children are awesome, I thank God every day for them. They have >> a deep emotional connection with us and other people that are part >> of our lives, even when I was told by doctors my oldest would not >> achieve that because of autism. It's been hard work, but he's >> blossomed. I was told not to expect him to interact with his >> younger brother and guess what? He does. We've done all traditional >> therapies, sensory integration, and floortime too. There are still >> many challenges, but we have a good support system. What drives us, >> most of all, is that we love them to pieces.>>>> And I'm certain that is what drives you. >>>> Don't let this particular study with a poorly reached conclusion >> make you feel bad about what you've done, and continue doing.>>>> >> >>> > But I did Attachment parenting (Dr Sears) from birth to my son's >> DX.>> > If this study is true then why does my child have a deficit in >> speech>> > pragmatics? Attachment parenting is the gold standard for sensitive>> > parenting. When my child was DX at 5 I dropped Ap and did floortime>> > for 4 years then RDI/Floortime mix for 3 more years. Both therapies>> > based off of guided sensitive parent interaction with the child to>> > increase social abilities. I hate this study it just make me feel>> > like I did not do enough which is ridicules as what else could I of>> > done? It feeds right back into parents of kids with an ASD DX >> have to>> > be super parents. I am not a superhero just a human.>> >>> > http://www.eurekale <http://www.eurekale> rt.org/pub_ releases/ 2010-02/uom- ams022510. >> php>> >>> > Contact: Marie Guma->> > m.gumadiaz@. ..>> > >> > University of Miami>> > A mother's sensitivity may help language growth in children with>> > autism spectrum disorder>> >>> > Researchers at the University of Miami show that maternal>> > responsiveness can predict language growth among children in the >> early>> > stages of autism>> >>> > CORAL GABLES, FL (February 25, 2010)----A new study by researchers>> > from the University of Miami shows that maternal sensitivity may>> > influence language development among children who go on to develop>> > autism. Although parenting styles are not considered as a cause for>> > autism, this report examines how early parenting can promote>> > resiliency in this population. The study entitled, "A Pilot Study >> of>> > Maternal Sensitivity in the Context of Emergent Autism," is >> published>> > online this month and will appear in an upcoming issue of the >> Journal>> > of Autism and Developmental Disorders.>> >>> > "Language problems are among the most important areas to address >> for>> > children with autism, because they represent a significant >> impairment>> > in daily living and communication, " says Messinger, >> associate>> > professor in the department of psychology at the University of >> Miami>> > (UM) College of Arts and Sciences and principal investigator of a>> > larger study of infants at-risk for autism, which includes this >> study.>> >>> > Maternal sensitivity is defined in the study as a combination of>> > warmth, responsiveness to the child's needs, respect for his or her>> > emerging independence, positive regard for the child, and maternal>> > structuring, which refers to the way in which a mother engages and>> > teaches her child in a sensitive manner. For example, if a child is>> > playing with colored rings, the mother might say, "This is the >> green>> > ring," thus teaching the child about his environment, says >> Messinger.>> >>> > In this study, maternal sensitivity (and primarily, sensitive>> > structuring) was more predictive of language growth among toddlers>> > developing autism than among children who did not go on to an >> autism>> > diagnosis. One possible explanation is that children with autism >> may>> > be more dependent on their environment to learn certain skills that>> > seem to come more naturally to other children.>> >>> > "Parenting may matter even more for children with developmental>> > problems such as autism because certain things that tend to develop>> > easily in children with typical neurological development, like >> social>> > communication, don't come as naturally for kids with autism, so >> these>> > skills need to be taught," says K. Baker, a postdoctoral >> fellow>> > at the Waisman Center, University of Wisconsin-Madison, who >> conducted>> > the study with Messinger while at UM.>> >>> > For the study, 33 children were assessed in the lab at 18, 24, 30 >> and>> > 36 months of age. Some of the children had an older sibling >> diagnosed>> > with autism and were considered high risk for autism.>> >>> > At the 18-month assessment, the researchers videotaped a five >> minute>> > period of mother and child free play in which the mothers were >> asked>> > to play as they would at home. Aspects of maternal sensitivity were>> > scored on seven-point scales ranging from absence of sensitive>> > behavior to extremely sensitive behavior. Children's language was>> > assessed at 2 and 3 years. At the 3 year visit, when the children >> were>> > old enough to be evaluated, 12 of children from the high risk group>> > received an autism-spectrum diagnosis.>> >>> > The study was funded by the National Institutes of Health. Its>> > findings parallel previous treatment research indicating that when>> > children with autism increase their connection to the environment >> they>> > do much better, Baker says. Understanding the benefits of sensitive>> > structuring in the development of language among young children >> with>> > emergent autism provides scientific support for early intervention>> > programs that focus on parent-child interactions. "We know that>> > parenting doesn't cause autism. The message here is that parents >> can>> > make a difference in helping their children fight against autism,">> > Baker says.>> >>> > ###>> > The University of Miami's mission is to educate and nurture >> students,>> > to create knowledge, and to provide service to our community and>> > beyond. Committed to excellence and proud of the diversity of our>> > University family, we strive to develop future leaders of our >> nation>> > and the world. www.miami.edu <http://www.miami.edu> .>> >>>>>>>>>>>>>>>>> Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign >> up now.>>>>------------------------------------

March 4, 2010

, you are right, the study was not a garbage study.

It will be fodder for sound bites and that is not the fault of the

study, nor should it be a criteria for planning studies. You asked

why the anger. It is a visceral reaction.

Autisticcrystal, if this study made me cry, I cannot imagine what

effect it had on you. My heart goes out for you while the weight of

the remembered years falls on my shoulders. Mine is at the tail end

of puberty (19), and Aspie, but severely bipolar. The beginning of

puberty brought more violence in a bigger package (he has always been

violent. First time he tried to kill me he was four). It also

brought some breakthroughs. I have no idea where we are going from

here, but he can barely function through the day with ADL's--mostly

because Aspies's don't seem to care about them. Especially when they

live at home with a sensitive (and Aspie) mom.

One voice in my head said--wow, without me he would have been worse.

Another voice said--if I had done more, he would have done better.

Voices in my head? Maybe *I* am the one who needs the antipsychotics,

lol.

>

> I think parents will be under this burden as long as autism remains in

> the spotlight.

>

> That said, I totally understand the anger I really do. I just find it

> unfortunate. It was not a garbage study.

>

March 4, 2010