tag:blogger.com,1999:blog-151793602011-11-13T21:14:14.573-05:00A Parent's View of AutismLibbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.comBlogger431100tag:blogger.com,1999:blog-15179360.post-1159920365604675482006-10-03T19:48:00.000-04:002006-10-03T20:06:05.616-04:00

Transition is coming! Our choices appear to be an autism classroom or regular classroom with support. And it only gets more interesting from there. The good news appears to be, though, that we won't be able to sell our house. Now that I've learned more about the district we were hoping to live in, I'll take our little rural one anyday.Time and time again, I've heard great things about the other

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com55tag:blogger.com,1999:blog-15179360.post-1157844176561435342006-09-09T19:04:00.001-04:002006-09-09T19:22:56.576-04:00

Bird is connecting more with us these days which results in both him being interested in his brother and sister and utterly irritated when they don't let him get his way. Bird doesn't call for my intervention ("Mom!!.....") in these cases, he just bites, hits, and kicks them. His older brother and sister are becoming a little wary of him. They really, really want to play with him, but they don't

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com6tag:blogger.com,1999:blog-15179360.post-1157163393095538592006-09-01T21:33:00.000-04:002006-09-09T19:31:05.090-04:00

A month has passed and the summer has ended. Bird started back at preschool through the local IU. His teacher is fantastic and we all missed her. Though his experience with his summer placement was terrific, having him go back to preschool feels like we are sending him to his second home.The summer program was at a new autism program in Hanover, PA called The Amazing Kids Club. The club is

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com4tag:blogger.com,1999:blog-15179360.post-1154377938373059132006-07-31T16:28:00.000-04:002006-07-31T16:32:18.386-04:00

I haven't blogged in a while for three reasons: First, we've been crazy busy, especially with the addition of swim lessons. Second, I've been avoiding the blog since sometimes I let myself get mired in the bog that is autism. Third, I've been mulling over a question from Amy Umble's article that I posted a while ago. She wrote, "Mostly, I want to know if she ever noticed the moment autism stopped

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1151496622456802912006-06-28T08:08:00.000-04:002006-06-28T08:10:22.456-04:00

Click here for an NPR interview about autistic adults who are embracing their autism and about one man who didn't learn of his own Asperger's until his son was diagnosed. Pretty interesting thread....

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1151193516753660202006-06-24T19:54:00.000-04:002006-06-28T08:07:53.376-04:00

We just started two fantastic activities, both of which all of the kids can participate in. First, I learned that a colleague gives swimming lessons in the summer. She's a special ed teacher in another district and completely comfortable with both autism and having a TSS in the pool with my son. So, off we all went on Wednesday. Abby had a blast. Samson discovered that, while he likes being in

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1150918610534466822006-06-21T15:25:00.000-04:002006-06-21T15:36:50.550-04:00

Attended a support group last night and remain a little frustrated. I went in hopes that I could hear other parents talk about their day-to-day lives. It would be nice to connect with people who live near me, too. Again, Adams county is pretty rural. But instead I heard yet another lengthy lecture about why we should all have our kids on glutein-free, casein-free, soy-free diets. When that was

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1150837283194743692006-06-20T16:43:00.000-04:002006-06-20T17:04:12.616-04:00

Bird has had a couple of interesting reactions lately when we try to go out. The weekend before last, he kept pulling me toward the door of Staples. He wasn't too agitated, but clearly he wanted to get out. Then, he began crying as we got out of the car to enter WalMart. These were big, fat, distressed tears, not the angry ones we sometimes get. We asked him, "What's wrong? Why are you crying?"

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1149988044901441472006-06-10T21:07:00.000-04:002006-06-10T21:36:24.513-04:00

I'm back from a conference in Vermont. It was for those of us in colleges and universities who provide disabilities services for students. Professionally, it was probably the only conference of true value that I've ever attended over the course of nearly 10 years. The strands were outstanding and I learned a lot. But personally, it was very rewarding as well, I think, mostly because I think I've

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1149021831028790652006-05-30T16:39:00.000-04:002006-06-01T17:14:56.843-04:00

Autism Speaks just announced that Rick Santorum will chair a Pennsylvania autism fundraiser. I can't tell you how uncomfortable this makes me feel. This is the same guy who is the least respected member of Congress. He is so poorly supported by his Republican constituents that he trails by at least 13 points in the polls for an election that is six months away. He campaigns actively against any

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com7tag:blogger.com,1999:blog-15179360.post-1148508383683551892006-05-24T17:51:00.000-04:002006-05-24T18:10:46.836-04:00

Call me catty, but I've started watching special needs parents in a new way, particularly if they have autistic kids. I'm interested in how they handle their typical and/or special needs children and how they handle themselves. Are they cautiously optimistic? Skeptical? Cynical? And when do they reach those points? At a workshop last night, I watched for slightly different reasons.First, I looked

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com2tag:blogger.com,1999:blog-15179360.post-1147812434192881992006-05-16T16:39:00.000-04:002006-05-16T20:27:33.813-04:00

This is a rather touching article by Amy Umble. I've been were she is now and then. It was originally published in the Fredericksburg Freelance Star:Strangers bonded by autismSEVEN YEARS AGO, a doctor looked at my toddler son and immediately recognized autism. Since then, I've seen it countless times in the halls of the mall, in grocery stores and restaurants. I will notice a child who seems a

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com4tag:blogger.com,1999:blog-15179360.post-1147172592222698042006-05-09T06:58:00.000-04:002006-05-17T11:54:55.386-04:00

My husband and I saw Temple Grandin in person this past Thursday evening. She talked about Animals in Translation, and her discussion bounced from autism to animal training and back. What a great experience. She had been diagnosed as severely autistic in the 1950's, but through the dedication of her mother and spades of good manners training, she's now becoming a leading animal sciences authority

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1146661529378616982006-05-03T09:01:00.000-04:002006-05-09T06:58:39.520-04:00

Here's an interesting article to mull over. A recent study concluded that the more mercury released into a county, the higher the autism and PDD rates. It stops short of arguing that this is causal, only that it is corresponding. Still thought-provoking. Another study uncovered the correlation between a decrease in other special ed diagnoses as autism diagnoses increased. It also stops short of

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1146243954972868102006-04-28T12:54:00.000-04:002006-04-28T13:05:54.986-04:00

I haven't posted in a while mostly because this whole autism thing is eating away at us all. My husband is in a deep funk. Me, I'm still trying to pretend that this is all going to be just fine. But then I see typical kids and it devastates me: Bird's brother is taking a gymnastics class. I got to wait outside the room with all of the other moms who, of course, brought all of their other children

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1145225424507924452006-04-16T17:56:00.000-04:002006-04-16T18:10:24.530-04:00

Well, it's been interesting around here lately. For one, Bird notices us - really, truly recognizes us - when we enter a room or talk to him, even if we don't force him to look at us. Most autistic kids won't even be aware that someone has entered a room, no matter how important that person is to them. They don't look up out of curiosity. But today, Bird was playing his latest, favorite computer

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com11tag:blogger.com,1999:blog-15179360.post-1144693238483872852006-04-10T13:57:00.000-04:002006-04-10T14:20:41.926-04:00

When coworkers ask about my kids, I'm generally nonspecific, just a quick comment on their wonderfulness. A few people know that Bird's autistic. When they ask how he's doing, I feel like I can't even begin to answer. They just don't get what autism is like. They try to be encouraging. "He'll start talking when he's ready" or "He's just being stubborn" or "He's just a quiet kid." But they simply

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1144407559368770182006-04-07T06:53:00.001-04:002006-04-10T13:57:05.193-04:00

Ok, so DMG was a staggering (and scary) failure. Now we are trying a combination of a liquid magnusium supplement augmented by B-6. We've found a way to slip the B-6 into his drink without notice, but the magnisium stuff has a strong blueberry taste that can't even be hidden by ice cream. So we just give him that straight. Only the second day in.Still very little language. Since the initial

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1143984054257887172006-04-02T09:10:00.000-04:002006-04-02T09:20:54.273-04:00

We put Bird on DMG for a few days. Some parents reported increased language and eye contact within a couple of days of using it. Bird, however, back tracked completely. I didn't tell anyone I'd started it, but within a single day, his TSS and his dad were both asking if I noticed he'd stopped talking. I had. And Bird had become lethargic and even more distant. He was back to actively avoiding eye

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1143506612388242962006-03-27T19:40:00.000-05:002006-03-27T19:43:32.396-05:00

That autism/viral connection seems to be disproven. Here is the article detailing the refutation of the doctor who I mentioned in yesterday's post. So much for wishful thinking....

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1143294049895043422006-03-25T08:19:00.000-05:002006-03-25T08:40:50.586-05:00

Confluence of information:Stumbled across an interesting reference in Children with Starving Brains. McCandless recounts the story of a young woman who appeared healthy but whose mother had a hunch that she had some sort of low level viral infection. Tests were run which determined that several titers were elevated, including one for herpes simplex viruses. A couple of months into a course of

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1142883765520081252006-03-20T14:36:00.000-05:002006-03-20T14:42:45.546-05:00

Washington DC schools now place the burden of proof on parents. If the parents believe the educational needs of their disabled child are being inappropriately served by the school district, parents foot the bill for the reassessment, etc. Again, those who can least afford it (financially, socially) will suffer. Call me naive, but even after teaching in the South Bronx, it never occurred to me

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1142035247459687392006-03-10T18:57:00.000-05:002006-03-10T19:00:47.476-05:00

I hope readers of this blog (you lovely few!) know what a big fan I am of Lenny Schafer, who posts the Schafer Autism Report. Sad to read that he's decided to retire his newsletter in a year. I've come to rely on his reports to share the most current research and news articles. I'll miss his work.

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1141818850931457322006-03-08T06:38:00.000-05:002006-03-08T06:54:10.943-05:00

Been thinking a lot lately about guilt and mercury and whether or not I'd be a complete nut to tell moms with babies that they need to ask about vaccines. For me, it all goes back to not being sure that Bird's flu shot did it. I've dealt with this before but of course there are no easy answers, even if strong evidence pointed to some sort of proof. Meanwhile, new policy directs parents to give

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1141096464071678972006-02-27T22:12:00.000-05:002006-03-08T06:38:48.930-05:00

About echolalia: Bird's father has trained him to reply to the question "Who loves you?" Bird's answer? "Daddy." [ This is Bird's Daddy. It's not echolalia. He knows his daddy loves him.]

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1140390826179067262006-02-19T17:23:00.000-05:002006-02-19T18:13:48.573-05:00

Bird and I were awake for quite a long time last night - he typically wakes up at 2am-ish several nights a week and is up for a couple of hours. Such sleep issues are not atypical of autistics. But, my mind drifted to sites I found several months ago of famous entertainers and sports figures with autistic children or siblings, famous figures who themselves are autistic or on the spectrum. These

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com2tag:blogger.com,1999:blog-15179360.post-1138369027612120532006-01-27T08:08:00.000-05:002006-02-19T18:22:26.093-05:00

I've read with interest recent rulings in the case of Shaffer v Weast in the Supreme Court and in the Ramsey case in the US Court of Appeals. Both concern me a little bit, especially in light of the Gaskin case which was recently decided in Pennsylvania. Shaffer and Ramsey both placed the burden of proof on parents if they are disputing the educational placement of their child. Gaskin allows the

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com3tag:blogger.com,1999:blog-15179360.post-1136491281808977382006-01-05T14:26:00.000-05:002006-01-05T15:01:21.820-05:00

It's been a nutty time lately and Bird is certainly asserting himself. He's normally pretty passive, but given the strong desire for something, he can and will both talk and tantrum. Cases in point:1. We visited his grandmother in the hospital. He enjoyed the elevator and the main hallways. When we entered her room (one which wasn't full of strange things), he dropped to the floor screaming and

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com3tag:blogger.com,1999:blog-15179360.post-1133911125049920292005-12-06T18:08:00.000-05:002005-12-06T18:18:45.060-05:00

Bird survived his first dentist visit. The exciting part is his incredibly appropriate functional use of language. When he was asked to sit in the large dentist chair, he clearly said, "No!" When he was given a toy that would normally engage him, he said, "No thank you." When we asked him to open his mouth and show his teeth, he said, "All done please." I was at once thrilled and disappointed. He

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com3tag:blogger.com,1999:blog-15179360.post-1132856124468800542005-11-24T16:14:00.000-05:002005-11-24T13:15:24.476-05:00

What I'm thankful for:My Dear HusbandOur children (there are three)That Bird loves snuggling upThat Bird's brother and sister try to understand and help himGreat books like Overcoming Autism by Lynn KoegelThe Shafer Autism ReportResearchers committed to determining the cause of autismResearchers committed to finding treatments for autismThe piano Bird is learning to playHugsBeing together

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1132429148578060422005-11-19T14:11:00.000-05:002005-11-19T14:39:08.603-05:00

Bird is a big talker of nothing in particular. While I cleaned the bathroom this morning, he spent fifteen full minutes twisting the knobs on a dresser and repeating, "Can you find the wheel? No, that's not it. Try again!" It was cute but a little disturbing. Echolalia, repeating words or phrases multiple times, is both a hallmark of autism and a sign that someday, Bird may actually have

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1131300552662955702005-11-06T16:08:00.000-05:002006-02-09T16:02:18.546-05:00

I finally made it to a parent group this past Thursday, hosted by our local school district. Bird attends a phenomenal preschool program run by them and I was interested in hearing from other parents of special needs kids. In spite of having lost my own ability to maintain a single focused thought in my head thanks to my rollercoaster mood swings about Bird's condition, I found myself focused

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1130887976834304552005-11-01T21:33:00.000-05:002005-11-01T18:32:56.836-05:00

What a long drive just to answer a series of questions while the doctor typed. He only looked at Bird long enough to check his ears. This experience has proven that we do, in fact, know exactly as much the doctors do. This doctor suggested that we run more blood tests, one of which is $1000 and never covered by insurance. It might show something along the lines of a mineral deficiency or mercury

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1130201426061905312005-10-25T00:30:00.000-04:002005-10-24T20:50:43.210-04:00

Being a parent of an autistic child has changed my relationship with our pediatrician, Dr. Y. With the first two children, he (often, she) was the authority I called each time there was a snuffle that lasted a little too long. Now, he's my peer. Although, with respect to autism, I think my husband and I are probably more well read. Today I visited Dr. Y to ask for a referral to a specialist. This

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1128897621468478572005-10-09T22:10:00.000-04:002005-10-09T18:40:21.473-04:00

Well, maybe I'm jumping the gun a little, but the fury paid off. A half-dozen well placed phone calls and we are on our way out of the first agency even as they replace the TSS who only lasted one week. Trust me, I appreciate their willingness to yank some other child's TSS to give her to us, but they have to understand how awful that is, regardless of whether or not my kid gets the person. The

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1128467196205831272005-10-04T22:10:00.000-04:002005-10-09T18:09:26.293-04:00

When we started the whole autism experience with Bird one year ago to the day, I was a very reasonable person. I was accepting of the agencies promises to help, ready to wait if necessary for good people, willing to wait as all of the pieces fell in place. One year later, I'm really pissed.We started with Northwestern Human Services because our local school district strongly recommended them.

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1128131981539716582005-10-01T00:58:00.000-04:002005-09-30T22:00:04.366-04:00

Here are a few key abbreviations to know when navigating the world of autism:ABA: Applied Behavioral Analysis - the one treatment for autism with verifiable, recorded, quantifiable results. It was developed by Dr. O. Ivar LovaasABBLS: Assessment of Basic Language and Learning Skills - used by BSC's and others to develop a customized curriculum guide for a child. It is exhaustive in its coverage

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1126575852395181102005-09-12T21:39:00.000-04:002005-09-12T21:44:12.396-04:00

Just about the time we line up several interested college students and commit to opening our home to perfect strangers, the agency calls to schedule the arrival of the new TSS. She's from Kennedy Krieger and ready to go. Cross those fingers. And we'll still keep the college students.Meanwhile, Bird's favorite video is Look! I'm Talking, which was created by a speech therapy group in London. He

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1125353923055235932005-08-29T22:52:00.000-04:002005-09-12T21:39:16.080-04:00

So, I've continued to spend time looking through the links that Daniel Ayoub emailed me. I've also finally (!!) called the mother whose name I was given by our most wonderful, and now gone, TSS. The mother has a son the same age as Bird who also has autism. She was very helpful and shared a list of names, many of which I've since called.One name was for a doctor in Quakerstown. That's two and a

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1124928799960874432005-08-24T20:03:00.000-04:002006-03-10T19:01:54.913-05:00

Much to my surprise, my email to Lenny Schafer made it onto his Schafer Autism Report daily newsletter. More to my surprise was the response. Half of the people who wrote in thought I was correct, that autism and treatment needs to be the focus of advocacy groups. The other half disagreed. Very politely. Maybe I've been jaded by posts and articles with a decidedly more political angle, but the

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com0tag:blogger.com,1999:blog-15179360.post-1124459136972923282005-08-19T09:41:00.000-04:002006-03-10T19:01:16.466-05:00

Dear Lenny,I began subscribing to your newsletters shortly after my son was diagnosed with autism. In that short time, less than one year, I've read items that made me cry or incensed me. Many gave me hope. But I am beginning to feel troubled by many of the articles which focus on mercury in vaccines as the cause of autism. After getting caught up in the whirlwind, scared and worried, my husband

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1123870657088793662005-08-12T10:49:00.000-04:002005-08-13T11:38:19.440-04:00

Lots of folks are discussing Leo Kanner and his first diagnosis of autism in the 1940's. I hope they don't use this point to speculate that autism never existed before than. The simple fact is that people have been autistic for a long time. And with remarkable spans of ability. It's that span that makes the diagnosis frustrating. We know that the disorder is characterized by a lack of social and

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1tag:blogger.com,1999:blog-15179360.post-1123380752846367292005-08-07T01:12:00.000-04:002005-09-12T21:45:46.726-04:00

Just before Bird turned two, he began staring out our side window. Not for a moment or two, but for hours if we'd let him. He might have been watching the trees and the traffic, we won't ever know, but he always appeared riveted, mesmerized. He wouldn't respond to his name while he was there, and if pulled away, would return as if pulled magnetically. It was as if the boy who was Bird had

Libbyhttp://www.blogger.com/profile/03158814770919178140noreply@blogger.com1