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An Idea Worth Sharing: The Divided Brain

6 Nov

I thought this video was really interesting, not only in what the talk is about but also the way it was presented:

I’ve always been fascinated by how our brains function, and how it enables us to adapt.

The drawings add a lot of context but also a lot of humor that make this worth watching more than once because there is so much that will be missed with one viewing…at least for me who favors the narrow focus of things while often missing the broader contexts or things.

In a sense the lack of connections between the two hemispheres has left us slightly learning disabled, I think, hence my categorizing this under that heading as well as perhaps having consequences in the the world of interventions and therapy.

Book Review: Autism & Alleluias

8 Apr

A while back I got an email inviting me to review a book, and the publisher even offered to send me a free copy in exchange for doing a review.  This blog does often result in some interesting offers (no job offers tho, haha) but I do not do many of them.  I like blogging because I can do it in my own time, in my own way.  I also do not read a whole lot of books on autism much anymore.  I’ve been around the business enough that I know they generally follow a similar formula.  Basically they tend to follow the story of a couple who give birth to a seemingly normal child and then within 2-3 years discover their child has some sort of developmental delays.  They are thrown into fits of grief, rage and searching.  Then the reader is led through a myriad of treatments and therapies, hoping against hope trying to find a cure.  And each book author has found some sort of cure or recovery story.  Or so it seems.

Autism & Alleluias is not that sort of book at all.  In fact, it is more of a Bible inspirational devotional than a real story.  Kathleen Buldoc may have covered the autobiographical formula in an earlier work, but this one is put together differently.  In 39 little chapters, she conveys a different lesson in each that her son has taught her even in the midst of being nearly overwhelmed by the trials and tribulations of raising a son on the autism spectrum.

Each chapter begins with a Bible scripture, then Buldoc shares a story of something that happened with her son.  It might be a call from the school, trying to sit in church, a vacation gone awry or any number of challenges that all of us parents are familiar with.  She will share her frustration and emotions before also sharing the lesson that each event teaches.  At the very end of each chapter, there is a prayer thanking God for the lessons learned.  It is basically about how she finds God expressed in raising a son with autism.

I found the stories encouraging as this was a good demonstration of the pluck and courage of one mother in spite of some very real and very large challenges.  Her son had many behavioral issues including some that seemed quite aggressive such as hair pulling and grabbing glasses.  It shed a light on how gratitude could be expressed even in some dark situations.

I did buy the book and once my wife reads it, I have no doubt is will be passed along to someone else.  In  fact, when it came in the mail I had to admonish Jane not to run off with it as she was REALLY interested it.  So it is safe to say that just about any christian mother of a child with autism would identify with, and like this book.  It is one of the few that lays out some comfort without a lot of guilt.  Many books that purport a cure,will leave a reader feeling very guilty for not trying it out or doing it, all in the name of finding a cure.  Kathleen does not do that in this book, but she does guide the way into finding more acceptance with her son and finding acceptance with God.

So all-in-all, I would say it was a worthwhile purchase, even though it is well outside of the genre of books that I normally read and buy.  I would be more apt to buy this for someone else rather than myself.  So I think this might make a good gift book for christian parents of children with disabilities, especially autism.

Last Day Before Break Edition

18 Dec

Well guess what? My GAA is NOT totally finished! In fact, I haven’t started on #2 at all! So, there you go, I can be as much of a procrastinator as anyone else. And the holiday mindset has been long set around these parts.

Here at the high school, Wednesday and Thursday were days of final exams. And last week was end of course tests (EOCT). So the schedule has been altered for quite some time. For my students, only the last couple of days have been more difficult. They simply do not do well when the schedule is severely altered. They get cranky, they get irritable, loud and sometimes even aggressive. The schedule and routine functions as a source of security for them (and the rest of us, too!) and they rely on that consistency to keep them oriented to time, since they can not really read a clock. So when the exam schedule calls for running the periods backwards or altering lunch time, it throws them and they let their displeasure and anxiety be known.

I wasn’t going to blog this next bit, but I think I will at the risk of offending some of the local folks. The topic is rather soft, but my treatment of it is not. The last couple of days of school, it is common for people to like to throw little parties and such. In elementary school, the teachers do manage to turn it into a theme day and that seems to work most of the time, but still runs the risk of upsetting the schedule for the students. I have no objections to the holiday-themed days with and for students. We did a great one in here last year when we studied Mexico and had a fiesta. No, my beef has been when the teachers decide to throw a potluck luncheon as a small group or department. For most departments, this is probably perfectly fine. And for most teachers, it is probably worry and drama-free.

But for me and my brave little band of paras and students, it represents yet another source of stress. My students need someone to feed them or at least help them feed themselves. They need someone to wipe their mouths, change them and wipe their bottoms. It’s just what we do. But when free food appears, a lot of that gets thrown out the window. We rely on a lot of outside help to feed during lunch and during every single potluck this year, much of that help has evaporated. The reason for this is that it is a potluck and not everyone brings food or enough of it. So there is a rush at the beginning of the lunch period when people are knocking down the proverbial barnyard gate, trying to waddle up to the trough in order to get their fair share. Which means 2 things: 1.) my kids are short changed 2.) My staff is short-changed.

During the feeding frenzy there is much gobbling, grunting and chomping in some nice quiet room whilst the 3 or 4 of us try to feed the 9 kids who are all STARVING – or at least they act like it. And this gets my mood seething and dark, as ?I feel like we are abandoned. By the the time we are finished feeding all the kids, the lunch period is nearly over. And my paras can forget about getting much to eat as the bones tend to be picked clean across the building or wherever the potluck is. There is no way to even participate without leaving the kids with someone…and those people are already at the trough. This is why I am coming to despise the potluck parties in our department. We’ve tried to have them in our kitchen, but the same problems are still there and exacerbated by the traffic and disruption as people are tending their food, heating, stirring, mixing, and serving. Since we somehow end up eating with the kids during these things, it sort of sucks a lot of the fellowship out of it. I have students who have issues with adults talking among themselves and ignoring them which isn’t uncommon among any students/children. Mine just get more active and vocal about it. But we are a very small part of the department, so I would not deprive others of the joy they get out of it. I’m just pointing out that it isn’t the greatest deal for us. The department party this evening, though, should be a better occasion to relax.

So, I probably come off as a bit of a scrooge about a lot of the holiday hoopla but it’s because my kids left behind in so many of the cases. That’s not to say that people do not do extra ordinary things. Yesterday, some of my students were able to watch a show put on by the drama students as part of their final exam. Of course some of my kids wanted to take to the stage themselves! I kept a few of those students out so the actors would at least have a shot at hearing their own cues and passing their finals. But it was nice that we were thought of, and I hope the drama students enjoyed having us as an audience. And the teacher who volunteered to host us for Christmas activities kept the invitation open but I wasn’t able to make it work out. But it was a nice invitation, nonetheless.

As the day wore on (and it wore on forever!) I pulled a page from Erin’s book and got out my Qchord and we played some Christmas songs. I had a few bells and tambourines and had a few of the kids joined in the playing of the music while one of them just danced to it. This got everyone in the mood for lunch, which was a bit of a mess since the cafeteria was in shut-down mode. even the custodians were coming through early, trying to get all the trash cans done. I mentioned to the one in our room that she might want to wait on us until the very last. We still had a mitt ful of students and they all had to have their diapers changed one last time before going home. And having a pile of poopy diapers sitting around for 2 weeks is not something I would like to contemplate.

But I think I got all the required tasks completed, and although tired I am feeling okay with where we’ll pick up next semester.

As for my two boys, they are both handling the holidays extremely well. Of course, Thomas is totally ready for school to be finished but is really doing well during these last few weeks. Not having to fight over the homework is the biggest and most welcome improvement. Percy has always done well, but the stress has gotten to him just a bit and he has had problems with strep and asthmatic conditions. But overall, we’re doing pretty well with the holiday stress and basically trying to avoid it as much as possible. As Thomas would say, We’re “looking forward to some luxurious R & R!”

National Autism Center Report

2 Oct
This just came up on my radar, and I thought I would check it out.
Before I even get into anything about the report itself, I do want to mention that actually getting a copy of the report involves submitting your name, email and state. I looked for any privacy notices regarding this information, but didn’t see any. So before even reading it, I resolved that I was going to mention this hoop that everyone must jump through. I think it is needless and detrimental to the stated primary mission of the organization which is to help professionals and families of individuals with autism. If you’re going to release the report to the public, then release it. If you’re going to harvest information from people who want to see the information, then be explicit about that.
Having said that, I went ahead and submitted my information, trusting that I wouldn’t be spammed into oblivion. I then download all 3 of the options and began reading.

Wheelchairs

10 Aug

I think I’ll talk about students with wheelchairs for a bit because that is foremost on my mind at the moment.

First off, I had a student get a brand new one today.  The Wheelchair Man, the physical therapist and his mother all came to our noisy, crowded classroom in order to be a part of this event.  This is his second new chair with me, as each student can get a new chair, paid for by Medicaid, once every 3 years.  Once the student leaves the school system, it goes down to about once every 7 years.  It makes some sense, since school aged kids are growing and will grow out of their chairs.

Most of my students have custom-made chairs.  This is one reason why it takes several months between the time an intitial request is made and the time it finally arrives.  First Medicaid has to approve the funding which can take a couple of months.  Then measurements are taken and then the thing can finally be ordered.  Basically if you start the process in May, you might see the chair by Christmas.  Welcome to public healthcare.

Customizations include having a seat and back that best supports each unique student.  It also may include custom tilt, brakes and even a custom drive train.  I know of some students who have chairs that can be driven and steered with only one hand!  And then there are the electic wheelchairs which are an entirely different category and issue.

So what is the deal with students in wheelchairs?  Well, for one thing there is the issue of physical space.  They take up a lot of it and they need a lot to move and turn.  There’s also the accessibility issue of getting around on ramps and elevators.  At one time when we had enough adults, we would often ride the Atlanta rapid transit system, and it was a major deal trying to find elevators and places to sit/park the chairs and then tried to negotiate the CNN Center.  But that was when I had only 2 chairs.

Now I have many more.  And when only one student can drive his chair independently, that means an adult has to push.  And in the event of a fire drill, we simply do not have enough adults to move all of our students where they need to be.  Just going to the cafeteria becomes a major ordeal!  Our community time is pretty much a thing of the past because we need enough people to cover and lift and move students during any emergency.  I’m tempted to stop by a nursing home just to get a feel for the logistics!

Over the years, I’ve learned how to make basic repairs and adjustments to most of the chairs.  Wheelchair Man comes to our county about once per month, and that is not enough time to service all of the chairs in the county.  And if the brakes are loose or a belt comes undone, I have allen wrenches and other tools available to make repairs.  Chair mechanic is just one more hat I wear.

Sitting in the same spot, even if it is a custom chair, can get really uncomfortable after a couple of hours.  As a result, we try to move everyone out and about every couple of hours.  Usually around 10:00 we’re full into diaper changing and then positioning students in standers, wedges, mats and tumble form devices.  It takes about 45 minutes to get everyone changed and positioned and it is VERY physically demanding.  I’m usually ready for a break after everyone is in place!  Once students are positioned, we can work with them on the mat or wherever they are to massage and stretch and just help them relax.  After 30-45 minutes, we’re getting back in the chairs and read for lunch.

Transporting a wheelchair is not an easy thing.  Many of the parents have a van with a lift but several do not.  The lift van requires a lot of fuss and bother getting the chair strapped and positioned securely.  Those without a lift usually have to break down the chair by removing the seat and back rest and then fold it.  This is not an easy task and is also hard on the chair.  Plus the student has to be transferred in and out of the chair.  As a result, parents of my students don’t come to many open houses or curriculum nights or other events the school hosts.  It is simply too enormous of an undertaking.  They shop and buy groceries and take care of other business while the student is at school, hence the major custodial role the school plays.  Teachers and school personnel really hate it that schools are mostly in the position of being tax funded daycares, but that is a huge part of what keeps the doors open.We provide safe and engaging places for the kids while parent work or do other activities vital to life.

The special ed. buses are all equipped with a wheelchair lift.  While they may be a bit shorter than other route buses, they are still quite large.  I drove these for community outings for about 7 years, and often the lift would malfunction resulting in either manually getting a kid off or us not being able to go.  One time we had to back a bus up so that a deployed lift fit into the emergency door of a second bus, so a kid could get down and off!  It was a real pain when the lift was stuck on the open position and we were out in the community.

I’m getting yet one more student in a wheelchair.  I don’t see how I’m going to have room for everyone to lay down, stretch out or move around very much.  I arranged my room to create more spaces than every for this purpose, but we’re still going to be short!

Thank you for enduring my rambling on about this topic.  I’m so tired, I’m lucky to be half coherent at all!

Why Experience Counts

3 Aug

School officially began and I am almost too wiped out and crushed to write.  At the same time, I am feeling almosted to crushed NOT to write!

I’ve found myself in the awkward position of trying to explain to administrators as to why experience and attitude are equally important in teaching students with severe disabilities.  While it is important no matter what you teach, there can be some dire consequences for NOT having some background with this population.  And if there is a poor attitude, such as a prejudice against kids with disabilities, no amount of knowledge or background will help.  We had a case a couple of years ago where a teacher and para got canned because of abuse charges, and they were both competent and experienced.  But they didn’t really like most of the students, and took it out on them with some rather foolish misconduct.

It takes at least a year for me to get a para up to full speed, and at least another year before I can consider them fully skilled.  Some take longer and some can learn a bit quicker, but it really does take a full year to learn all of the ropes involved in opening school, teaching the GAA, doing all of the Special Olympic events and enduring me through all of my IEPs.  For the past several years, it has been almost impossible for me to keep a fully qualified team intact.  Sometimes it is because staff members move on, but most often it is because the administration sees a sharp para and they take them away for AYP/political/unkown reasons.  This infuriates me, especially when I have an oppressive class load like I do this year.  It is basically a case of discrimination based upon disability, considering my students less worthy of highly qualified people rather than the more general population.  And I am not putting up with that any more.  Next time that happens, there WILL be a letter sent to the office of civil rights.  The culture of discrimination ends today.

So just what does the learning curve involve for a new para?  First, knowing the kids and their names and the nature of each ones disability.  It’s important to know whaen someone is just having a behavioral issue and when someone is having an autistic issue.  It’s important to know who has seizures.  You have to know things dealing with mobility, physical therapy, communication, feeding, toileting, and allergies.  And the preceding list are all things that have to be known simply to get the students through breakfast!!  The learning curve is extraordinarily steep, detailed and challenging.  Feed them something they are allergic to can result in DEATH!  But most of my students have no way of telling us if something is bothering them or what it is.  The best way is by knowing them, and it takes time to do that.  With regular high school kids, they can tell you all about their summer, what they are allergic to, what they like and dislike, what positions or noises or things make them uncomfortable.  Many of my kids just scream, holler and hit their faces or bang their heads, and we have to figure it out.  Knowing them over a period of time helps take some of the guesswork out it.   And then there’s the work involved in getting to know the new students.  It’s difficult for me to quickly get to know a couple of new students if I’m also helping new staff get to know the other 6 as well as the new ones.

The first day of school is stressful for all students and teachers.  Many express themselves in various ways by talking about it.  Some might act out behaviorally.  Some might just poop their pants all day long.  Which leads to the next extraordinary facet of my setting.  It is totally and utterly  physical.

By 10:30, my shirt was soaked with sweat, even though the thermometer in my room read 68 degrees.  I felt really bad for the poor kids I was changing as sweat was dripping from me on to them.  I tried keeping it wiped off and soldiered on.  It was all about lifting, undressing, dressing lifting some more, positioning in a wedge, stander or on the floor and getting the next one, followed by repositioning.  I found myself channeling the days on the farm stacking hay under a hot tin roof!

Some folks are a bit surprised that I, as a teacher, change diapers instead of just letting the paras do it all.  But I totally believe in leading from the front.  Besides, if I have a couple of students that are demanding all of my time for whatever reason, changing might be the most quality time I spend with some!  It is a very sad fact that even with only 7 or 8 students that it is often difficult to find a sufficient amount of time to spend with any individual students.  So today was spent teaching the 2 (out of three) new paras some of the ropes while also trying to decipher and figure out the new behaviors from the old students and all of the behaviors from my new students.  By the end of the day, I was sore and exhausted.  I spent too much time laying around this summer!

I do think my new para team will work well once everyone gets up to speed.   I also have faith that my students will adjust and be fun to work with, each in their own way.  But it is always such a long and steep climb to get to that point!   It’s difficult explaining this to someone who does not exist in the world where I’ve been living over the past 10 years.   But those who are making these decisions need to know that their seemingly haphazard decisions have consequences.

Annual Reviews and Itinerant Teachers: The Bind that Ties

2 Mar

I wonder if there are other counties that have the same problem that we do. I can’t imagine that a county would NOT have this problem, and if you don’t, please share with me how you avoid it!

Basically we have a huge number of students with IEP’s in our county who get all sorts of services such as speech, OT, PT, VI, DD/HH, APE and others I’m probably missing. From February on, teachers in the county are scheduling their annual IEP reviews and inviting parents and service providers to come to these meetings in accordance with the due process outlined in the IDEA. The problem is that these itinerant service providers, wonderful as they are, can not be in two places at once. They can either deliver services to a child OR attend an IEP, but not both. In past years, they pretty much spent the last 2 months of the year going to annual IEP reviews and providing very few services to students.

So here is a question for you parents: which would you rather do: have all of the people providing services at your child’s IEP, or have them continue to provide services to all the students in the county?

This is an eternal dilemma with regards to the law that is largely hidden from parents. The due process that is written into the law to protect parents and serve students often seem to work against each other. The law says we have to serve students but it also says we have to conduct annual reviews and develop IEPs that include the parents and all service providers. The problem is that itinerant service providers frequently have caseloads of 50 – 100 students each or even more. We only have two physical therapists and two adaptive PE teachers that serve all the schools in the county, so they simply can not be so many places at once and at no point are the service providers all in the same place at the same time. So for my students, the IEP might be the only time that the itinerant service providers have a chance to meet and collaborate on a specific student. But if they are there, they aren’t providing services.

Teachers, how would you feel about having all of your meetings after school in order to get all of the itinerant services to participate? I bring that up, because it is the only way I can see of avoiding the conflict between providing services and attending the meetings.

As a parent. going after school might be only slightly more convenient but there’s still the issue of childcare for the student and his/her siblings. If there has been sufficient communication throughout the year, having the itinerant service provider at the meeting might not be so crucial as long as a good written summary is provided.

There is probably some way to streamline this process using some of the current technology in order to accommodate all of the diverse schedules. Using the telephone to aet up a teleconference is one way of doing it. Using web tools might also help provide access, especially if providers are at other schools thus cutting down on travel time and expense.

Ideas?

Discrete Trial Training (DTT)

4 Jun

In making my course for teachers and paras for students with severe disabilities, I’ve been looking for content related to what we do in the classroom. Today I decided to work on Discrete Trial Teaching (DTT) sometimes also called Discrete Trial Instruction (DTI). Same thing, different name.

I prefer video over text alone, so I went first to TeacherTube, since the school system doesn’t block that site. However, the only video there on the subject is the one I posted. Oh well. YouTube is a better source for videos on anything and a search there was much more fruitful. Here’s one working with a very young child. No matter the age, the same rules always apply. Keep the instruction consistent, reinforce independent responses, and record the responses for data analysis. The YouTube video gives very comprehensive, yet concise instruction on the topic and I’d love to use it.

There is also a series of Lovaas training videos on YouTube which are much more advanced, behaviorally speaking, but the one listed above gives a better overview in a lot less time . Part 1 shows how not to do it in the beginning, which you can see from the comments elicited strong reactions from a few viewers. It’s a bit dated, but you get a good view of a purer form of DTT from the Lovaas people. There are many YouTube videos in a variety of languages worth looking at and these are mostly used for and by parents. Teachers and paras really need to tap into this information, too.

Typing in “ABA” reveals a lot of videos showing it in action, mostly with very young children with autism. DTT is not the same thing as Applied Behavior Analysis (ABA). ABA is more of a global description of a system. It’s sort of like referring to “rain” as “weather.” Yes, rain is weather, but it’s only one aspect of weather and even precipitation. Weather encompasses all manner of meteorological events including wind current, barometric pressure and the jet stream. ABA encompasses a whole lot more topography beyond just DTT, but a lot of people outside the field confuse the two.

I recently put a couple more videos up showing some of what I do with a type of DTT here and here. This is also serving as a sort of tutorial in modeling for para instruction at the same time instructing the student. I probably need to make a more explicit para training video since that is a big issue for most special ed teachers.

I like DTT because it is straightforward, and something that paras can learn and do pretty easily. It can yield some good data and works well with short-term IEP objectives. It is something that is not expensive to set up, and it is accessible to anyone who wants to learn how to do it.

Catherine Maurice’s Behavior Intervention for Young Children remains one of the best and most accessible resources on the subject even though she makes the common mistake of confusing ABA with DTT. Many of these interventions can be used with older students with severe autism and you’ll recognize what we do in the videos compared to what is done with the youngsters. It’s only been within the last 10 years that DTT really took off in the autism community, so students in high school were probably never exposed to this behavioral technology at a younger age.

D.

Going back in time for Spaz

23 May

Jackie stopped by and asked:

If you could go back in time for Spaz, what do you think should have been done to better his outcome (in any and all areas you care to comment on).

Wow. That’s so tough, but I think it’s important for any parents who do have children with severe autism and behavior problems. It’s important to realize that back in 1985, when Spaz was born, no one knew much about autism, let alone interventions and services. So just being born later will improve the prognosis for most kids. Spaz was born 12 weeks premature, so he’s actually lucky just to be alive. Even 30 years ago, that may not have been the case.

 

First off, I’ll say there is no substitute for diligence as a parent. What I mean by that, is holding firm to behavioral expectations like a dog on to a bone. I’m drawing from my own experience as a parent here, and therapies come and go but parental consistency is the one thing that stays the same. Hopefully. Jane and I were hyper vigilant early on, and this paid off as Thomas grew older. And this leads to a second thing: you can not do it alone. Jane does an excellent job and takes the bulk of the credit but I’m in there as well. It helped being in the field and actually trying out some interventions that I was learning about, like floortime, discrete trial, pivotal response training, ABA, augmentative communication, PECS and video modeling.

 

If I had to recommend one publication for parents who are seeking peer-reviewed literature on Autism, it would be Focus on Autism and other Developmental Disabilities. This is a journal but it has stuff that an everyday parent would find interesting. Jane would get it before me, and read the entire thing before she’d let me have it. The Journal of Applied Behavior Analysis is okay, but it quite technical and not specific to disabilities and autism. The Journal of Positive Behavior Interventions is another journal of practical interest, especially for teachers.

 

The reason why I recommend knowing the literature is because the temptation towards fads in inescapable. So many people are out to cash in on the epidemic, that if you have little to on knowledge, you’ll become just another proof of PT Barnum’s maxim.

 

Jackie mentioned in her comment that her son has many of the behaviors Spaz has. Keep in mind, Spaz has actually improved and matured since I got him 6 years ago. I went to work on his most serious behaviors, which were hitting, kicking and scratching the crap out of all of us. Almost all of that aggression is gone, now. Now we’re working on the spitting, self-gagging, biting stuff and potty training. We still have a long way to go, but one has to understand how far we’ve come. So if a child of 8 years is where Spaz is now at 21, there’s time for making even more improvement. Sort the behaviors from the most severe, and work on them accordingly. Be aware that new behaviors can and will probably pop up and have to be dealt with.

 

Boys and masturbation: I’m not quite ready to go there, but it is something to look forward to into the teenage years! Spaz’s wiring seems to have spared him this ultimate of self-stim behaviors or maybe it just hasn’t hit yet.

 

One thing that really helped Spaz and Thomas was being around peers. Not necessarily non-disabled peers, but peers who were a bit higher functioning that were social. It’s when Spaz got interested in making friends that he really made strides with the aggression. It was the same for Thomas and the potty training. Once he got around classmates who were all potty trained, that was it for him.

 

Spaz has had access to all sorts of therapies including OT, PT and speech. His mother really has done well taking him out, enrolling him in activities and making his life as full as can be. But he still has a tendency to tear the house apart.

 

It’s hard to say what I would do with a younger Spaz. Sometimes I think I should have went after the potty training more aggressively myself earlier on, but I was still acquiring knowledge myself. I did the best I could with the physical and mental resources that I had. And really, that’s all any parent or teacher can do. It’s interesting to think about what we might do differently, and I hope I’m doing things better nowadays. That’s why I prefer looking forward to looking back. I know I made mistakes back there and that’s where I’d prefer to leave them, while carrying the lessons forward.

dick

Oprah’s Autism Special

6 Apr

The Queen of the day time talk shows had a special on autism and I had a chance to watch portions of it while doing some other things. Jane was the one who knew about it and was extremely keen to watch it. I was not so keen, but watched a lot of it anyway, since spring break hasn’t given me a lot to blog about.

I did not see any segments of the Autism Speaks video that she might have shown. However, I did see some of the discussion of parents talking about the heartbreak at their “lost” children and the devastation this disorder has caused for these families. It seems almost every media presentation on autism has to cover the devastating impact of the disorder and the emotional, financial and physical hardship. These struggles do make for good press.

But at the very end of the program, the young father tried to articulate how much he has learned and grown from being around and raising his young son. The other parents all seemed to agree with this, and I thought it was the best part of the whole show, but was the shortest segment.

For sure, autism is mysterious and scary and I wouldn’t exactly wish it on anyone. It is a difficult challenge that seems to just go on and on. I’m glad there is an effort to educate the public about it, despite the fact there is such a rich mix of information and disinformation on the subject. The scariest aspect, I think, is the isolation parents feel from other parents who are raising neurotypical children. Raising awareness can help lessen that feeling of being alone. I remember trying to explain autism to our own family members who just didn’t quite get it. From that standpoint, the exposure is definitely a good thing.

The dissention within the autism world is not a good thing. Oprah had an expert who I hadn’t heard of before, who said the vaccine connection had been largely refuted. When she said that, Jane about jumped out of her chair, saying, “No it hasn’t!” Even within our own house, we’re not of one mind on this. After a commercial break, Oprah allowed a parent to speak to the other side saying that she was convinced there was some connection between autism and vaccinations. I think Oprah handled this very well, which goes to show why she is #1 in her business. But it is disconcerting to see parents and experts sniping at each other all the time.

Just for the record, Jane is convinced there is a connection to vaccines and I am not. I’m not outright refuting her beliefs so much as saying that we don’t know and I’m not going to jump on the anti-vaccine bandwagon whole heartedly without more and better evidence. And anyone trying to convince me one way or another will only hurt their case, so they can just shut up. Argue amongst yourselves, and let me know who wins.

Thank goodness Oprah didn’t delve too much into all the different treatments and “cures” that I’ve had to endure. Save that discussion for a more appropriate forum, like The Jerry Springer Show!

Being the parent of a child with autism is difficult, but it is not hopeless. Far from it, I’ve seen a lot of advances in the education for parents and their children in the past 8 years. If I had to point to one group that is doing it right and is somewhat outside of all the controversial treatments, it is the speech language pathologists. I’ve seen some that weren’t so good but a whole lot more that were sharp, on the ball and performing quasi-miracles. For parents of ASD children my best advice is to find a good SLP and learn from them to do what they do with your kids.

We’ll probably see a lot more in the media since April is Autism Awareness Month. For my part I’m suffering from autism fatigue as I have lived and breathed it for the past 6 years or so and there is just so much out there. For the first time in a couple years, I’m not going to the autism conference. I looked at the programs and felt like I had pretty much seen it all. I know that’s not altogether true, and I did see some programs that were added late that I might want to see. But it is the same weekend as our Special Olympic bowling tournament and I felt like I needed to be there for that. But I’ll keep my eyes open for new information and will pass on any new thoughts/ideas as they come along.

dick

 

Head over to Kristina’s site for an the Oprah show overview.

 

I also have an updated review of the latest Oprah material.