Friday, April 29, 2011

University Students with Autism, Asperger's

Please see my newer entry on this subject:
http://theautisticme.blogspot.com/2011/05/autism-and-higher-education-rights.html
This post is now locked. Unfortunately, the post did not lead to the intended conversation on what parents and students might want a college to do for students with ASDs. I might try again in a few months. I need to write something that clearly explains what I am seeking to learn from students and parents.

As I prepare to relocate and start a new university position, I am also considering how I might advocate for current and future students. (Technically, the post is "official" in August -- but I don't foresee any complications.)

Professors are in a complicated position, because students are protected by the Family Educational Rights and Privacy Act (FERPA). When I have received notification that a student has special needs, the disability services of the school only indicated what the needs were -- not the underlying reason for accommodations. Student privacy is paramount. In planning to work with students, I have to consider FERPA and any other applicable regulations.

I am trying to determine what a small, private university can do to serve the autism community. The university is known for business, mathematics, technology, and health science programs. It is not a liberal arts college. Even the "English Studies" program is within the School of Communication and Information Sciences.

Share your ideas and I'll spend the summer trying to develop a plan I can pitch to administrators and faculty over the coming year. In the meantime, I will be getting as involved as I can in local advocacy once my wife and I move. The adventure begins soon.

I will have to rely on persuasion to convince disabled student services and the university to work with me on any plan to serve students with autism spectrum disorders. However, I'm sure these arguments can be made. I am looking to other universities for inspiration, as well. There are several with "residential" autism support programs. As I tell my students, always borrow a good idea -- just be sure to credit the source.

What would you want a university to do to create an inviting atmosphere? What could I do to build a program that would attract students and their families? Help me create something special for university students.

Tuesday, April 26, 2011

A PBS series injects doubt back into the autism issue

The Los Angeles Times has published an interesting take on "Autism Now."

A PBS series injects doubt back into the autism issue
By James Rainey
April 27, 2011

[Excerpt only -- read the full column via the link above!]

I asked her father whether he should have told the television audience more about his daughter, given her strong positions, which have been expressed on blogs for several years. MacNeil said it "never occurred" to him to make such a disclosure since he said the community of families involved in autism is familiar with her activism.

I suggested that there were likely many others watching PBS who didn't frequent autism chat rooms, who had no idea that Alison MacNeil, a psychiatric social worker living in Cambridge, Mass., was such an activist.

The veteran newsman — who has written a biography, novels and appeared occasionally on PBS since leaving in 1995 — said he was dismayed at the heated atmosphere that surrounds the autism question. "It's like so much in American politics right now," he said, "there is less than zero tolerance for anyone's view that is not the same as yours."

But that incivility has been administered in great measure by the anti-vaccine crowd, who have vilified anyone who dared suggest that mainstream science might be acting in good faith. If the PBS autism series insisted on broaching the causation theorizing, it at least should have issued clearer and stronger admonitions that have come from public health officials: The flight away from childhood vaccination has allowed a slow resurrection, with occasionally deadly results, of measles and other diseases.
Sorry, but again, not open for comments on this particular link. If you wish to comment on the column, do so at the L. A. Times website. I didn't see the show, and don't plan to see it, but the reactions are interesting -- and predictable. Unfortunately, "Autism Now" reignited passions I can't edit and screen at the moment.

My apologies, but you should read the full article anyway.

Sunday, April 24, 2011

'Whatever' Moments in [Autism] Blogging

I maintain several blogs, all started as part of a class project some years ago. (See Four Years as an Autism Blogger for the history.) One of the things you have to accept when writing in public forums is that some people will feel compelled to insult and attack an author instead of his or her writings. Also, you have to accept that though you are writing from one perspective (which should be painfully obvious to all readers) someone will be upset that you don't share his or her perspective.

These are the "whatever" moments of writing, especially of blogging.

I write a monthly column for a regional magazine. The column has nothing to do with autism or special education. I write on technology issues. But, as any technologist will affirm, technology preferences and biases are accompanied by a religious fervor. Armies of zealots, the true believers, will descend on any writer daring to question their beloved operating system, hardware, application, or programming language. A good tech writer might be accused of being an Apple Fanboi one month and a Microsoft Apologist the next. Someone is always offended; the same people upset this month were probably praising my column last month. That's how it works.

Expounding on economics and political rhetoric is interesting because the debates are often circular. Those topics include people arguing 180-degree points of view, simply based on whether it is "their side" politically taking a specific action or uttering a specific phrase. The "other side" is always evil, a demonic group with no concern for the future of the United States or the world. The notion that people (especially economists) simply disagree? That can't be. If you disagree with "my side" you must have an ulterior, villainous motive.

Generally speaking, I don't receive death threats or the worst kind of hate mail based on what I write on most topics. The exceptions: religion and philosophy; those topics are as personal as living with a disability. Yes, writing about autism leads to a special kind of hate mail and personal attacks. The attacks often appear on other websites or public forums, so I only see them when I am told about them.

Whatever.

Writing and speaking publicly on my experiences, my research, or simply my opinion on something is certain to lead to conflicts with various people and groups. There are many "whatever" moments in autism blogging.

Everyone knows there are some topics certain to excite a response. Blogging about them drives traffic, but doesn't often change opinions. The controversial topics include: vaccinations, genetic screening, various therapies, school supports (and costs), and insurance coverage (again, costs). You question some things or defend others with the knowledge people will be angry and/or defensive.

Then, you have topics that I never imagined would be controversial.

I've written about being disabled. How controversial is it for someone (me) diagnosed with Erb's palsy, Jacksonian seizures, base membrane dystrophy, and a cane to describe himself as disabled? Apparently, pretty controversial. I learned of a post claiming I wasn't disabled several months after the comment was posted. Pretty strange, but that's blogging for you. If you are even slightly more "able" than someone else, you can't self-identify as "disabled." I had never expected that reaction to an essay or blog post.

I never imagined writing about relationships and ASDs would offend anyone. Clearly, I was not and could not be writing for the most impaired children and their families. No disrespect intended, but if I'm writing about dating, I'm obviously writing about a very narrow sub-group within the autism community. Not every topic I write about or speak on is going to address every individual diagnosed with "autism." I couldn't believe it when parents and educators wrote to complain that writing about relationships was "mean" or "dismissive" of their children. I do advocate for the severely disabled, but a guide to relationships isn't going to address every imaginable cognitive capability.

This leads to the next topic I never anticipated engendering anger: post-secondary education. Yes, I admit once again that not every child with a disability will someday go to college or vocational school. Heck, not every "normal" child has the opportunity to pursue his or her intellectual capacity in this or any other nation. There's much I could write about assuming every child will go to college. However, when I write about how to help college students diagnosed with autism, it should be clear (again!) that I am addressing a very small, unique group of individuals with a challenging mix of intellectual capabilities and physical challenges. How in the world could this upset anyone? But it does. I have been told writing about college ignores the children who will not attend a university. Of course it does. I'm sorry, but every topic does exclude someone.

Finally, I've suggested, drawing from my research, that the definition of "autism" is problematic. I imagined this was somewhat self-evident. There is no way that we can compare a successful professor diagnosed with any "autism spectrum disorder" to a young girl with Rett Syndrome (generally now considered something other than autism) or anyone with a cognitive degenerative disorder. What we call "autism" is unlikely to be one thing and the notion of a "spectrum" doesn't help -- it confuses people by implying there is a single set of underlying causes and one set of treatments. Most autism researchers will tell you there are "autisms" just as there are "cancers." Cancer isn't one thing with one cause and one solution. Autism is at least as complex. But, to suggest my "autism" is different, with different needs? That seems to upset more readers than anything I've written.

I don't intend every post for every audience. I write what comes to mind -- my mind. I also try to answer questions, so visitors are able to suggest future posting topics. If you aren't interested in a post, you can skip to another one or leave this site to read another. But, some people just have to write an angry or even threatening e-mail.

Sometimes, I can only respond with, "Whatever."

Saturday, April 23, 2011

A Review Of PBS's NewsHour Series, Autism Now

I encourage everyone to read this review. You might not agree with the mother posting, but the post echos much of what my own mother has said to me about raising a "challenging" child (me): Being a parent is hard, period.

Click the following link to read the blog posting by K. Wombles.

Countering...: Now That It's Over: A Review Of PBS's NewsHour Series, Autism Now: "The PBS series on autism, Autism Now, has aired all of its segments now. The extended transcripts of interviews are available online, as ..."

[Comments should be posted on the original blog so the author can respond, not to The Autistic Me. I respect the author and believe she should manage this discussion, not me. I did not I watch the PBS series and have no interest in commenting on it.]

Friday, April 22, 2011

Our Anniversary - To the Greatest Person in My Life

Today, my wife and I celebrate our fifth wedding anniversary. We were married in a small ceremony (our parents and my sister) in my parents' backyard on a nice spring day in 2006.

Instead of a long litany of every challenge we've faced, and there are many, I want to celebrate who she is and what makes her so special.

Let's start with the blunt, honest, and often painful acknowledgement that unlike many of the children and teens I meet when speaking, I have been fortunate enough to meet someone, care for her, and to be cared for by her. Some autism self-advocates forget how rare it is for autistic people to form lasting bonds with a life partner. For reasons ranging from physical challenges to cognitive ones, some autistic people will never have the opportunity I have to be with a great friend and partner.

Also, there are those autistics with no desire for life-long romantic relationships. Parents tell me that they can't imagine a teen with no interest in romance. Well, that's simply how some of us are wired. It is ironic that people tell us that "the spectrum" affects empathy, while at the same time "normal people" cannot imagine we live fulfilled, content, and even happy lives without the extreme passion seen in the media. People can't seem to "empathize" with someone comfortable with a calm, quiet existence.

What makes my wife special…

She is an introvert, never forcing me to be social when social isn't possible. She's content sitting on the couch with a book, our cats, and me watching the latest History Channel marathon.

She loves knowledge. She reads more science news than I do, and she loves every new bit of information. It isn't trivia, it is knowledge! From wanting to know the local wildlife to the science of cooking, she tries to learn everything about the world around us.

She appreciates art and music, even if we differ on specifics. We both love museums, and I'm sure she'd love a great philharmonic performance. The notion that "geeks" and "nerds" don't appreciate art is ignorant, at best. Art and music are scientific -- it would be impossible to love science and not appreciate the applied technologies that create works of art.

She loves crafts. Sewing, quilting, beading, knitting, stitching, and more, she loves to work with her hands and create something. Things you make are always better than things you buy.

She is organized. Trust me, being organized is essential to life with me. I like order, but I seem incapable of maintaining it. She likes lists, spreadsheets, databases, and plans more than I do. Maybe that's the nature of a good engineer and technical writer. She likes things to be labeled and in their proper places.

She loves cooking. Not every experiment works, but we try. If she had more free time, I know she'd try more recipes from her collection of cookbooks. And yes, her recipes are in a database.

She loves animals. I could never understand someone without a soft spot for cats, dogs, and all other cute little furry animals. I can't imagine what life would have been like without our "kids."

She doesn't "need" anyone. There's nothing she couldn't do alone, but she chooses to be with me. That's pretty amazing.

Hopefully, I'm going to be able to do everything for her she deserves in coming years. It looks like she'll finally be able to relax a little, after being the primary support for our household. Now that I'm done with my doctoral studies and a great university position seems likely, my wife can finally enjoy some time to pursue her interests.

Nothing would make me happier than to know she's enjoying a garden, some time to cook, and lots of time for reading.

Wednesday, April 20, 2011

Trying to Wait Patiently

I apologize for not having posted more frequently this month. This month has been hectic, as it appears the job search took an unexpected (and positive) turn that has resulted in a cascade of disruptions in our daily lives. In a week or two, I should be able to officially confirm my contract and explain my new position.

A new job creates the following disruptions to which most people I know relate:
  • Relief that someone values my research interests and writings;
  • Anxiety of learning a new set of colleagues and their personalities;
  • Fear of not meeting expectations within the organization;
  • Eagerness to learn as much about the new position and its duties as possible;
  • Sadness (limited, however) that we will be leaving a familiar place; and
  • Dread of moving and having to learn a new area — much less a new house!
I worry about everything from locating home repair experts we can trust to finding a great vet for our feline "kids." I've spent hours online researching the university, the faculty, and the new area. I want as much information as possible before relocating. 

My wife has agreed to fly out for any necessary appointments regarding a new house. I'd rather limit my flights to as few as possible this year. I'm already tense enough without the misery of flying five or six times in a single year. Three or four roundtrips is going to be sufficient for me this year. (I'm afraid there will be more, though.)

Moving is going to be miserable simply because it disrupts my order and routine. I have no idea if there is an "easy" way to cope, so I'm trying to reduce other stresses as much as possible. Anyone have great ideas or strategies for moving?

We have decided to pay a moving company for the first time. We've moved into three apartments and this house with family and friends helping us. This time, we're not going to try to do everything. 

I'm a bundle of anxious nervous energy. I'm even losing a little weight. Not at all fun. Yet, I know moving for a new job could be a great thing.

I admire military families, moving every few years. I'd lose my sanity. 

Friday, April 15, 2011

University Post Likely

I haven't had enough time to work on various Web projects, including updates to the various blogs. This is one of those months when the rush of activity has a direction and purpose, though it has been exhausting.

For several months, I've been interviewing with a mix of colleges, universities, and corporations. I have struggled to find that ideal alignment of my traits with a potential employer. The job hunt was officially concluded in March after I decided that 200+ applications was enough; one last batch of interviews and then I was going to focus entirely on freelance work.

While trying to focus on consulting and creative writing the phone started to ring (literally). I experienced a flurry of phone interviews, e-mail follow-ups, and travelled to the Northeast. I had to schedule the job-related activities around speaking, editing a book draft, and general life activities. I hate disorder, but that's how life is.
The Lede: A private university has extended an interesting job offer and we are likely to accept the post.
I'm not comfortable sharing details until there is a signed agreement, but it is difficult to imagine I won't be accepting the faculty position. It's a good school in a nice location. Best of all, it is an exciting challenge that fits my interests.

In a few weeks, I will be posting more details.

Parents often ask me about students with special needs and post-secondary education. Part of accepting a post is a sincere belief that I can be an advocate for students. I will do everything I can to work with the office for disabled student services (also known as "disability services") and serve as a mentor to those students. The campus clearly is dedicated to student success, with several programs designed to support students.

As they say, stay tuned for more news.

Tuesday, April 12, 2011

When a House is a Mess

My wife and I bought a "distressed property" four years ago (roughly) and have been renovating it ever since. I hate the mess, the disorder, the general state of "flux" that is necessary during a remodeling project. However, I also love some of the end results. The bedrooms are pretty nice, especially the closet organizers, and I absolutely love the tile work my wife did in several places. We have a gorgeous serving counter in the dining room, thanks to her efforts.

Tomorrow, the projects resume with the arrival of springtime weather. Winters are simply too cold and too snowy to get much done.

A bathroom and a closet are being re-textured tomorrow. That means a pair of workers in our house -- something I dislike as much as the cats dislike it. Two of our cats will spend the day hiding under beds. I can't join them, but I do understand the stress caused.

These are the last "big" projects on the house. We've had the chimney repaired, all windows replaced, and we've installed new flooring throughout. I'm glad to see the end is near. It has taken a lot of time and even more sweat (and blisters, blood, etc.) to get the house to this point.

I've compared this to a four-year moving project. Some things are still in boxes as we work on the house. I still can't always remember which boxes have which items. It is disconcerting to have things so disorganized for years at a time.

Just as we finish the house, our goal is to "upgrade" and start this process again! Why? Because projects like this are one of the few ways for people to upgrade in today's economy. It's a tremendous effort, for hopefully a little bit of a gain.

I am not "designed" for work like this. I hate noise, dirt, dust, and disorder. You can imagine how fun this has been for my wife, too. She's had to tolerate the days when I simply couldn't do any more, for a variety of reasons.

Anyway, tomorrow will be… not fun.

Saturday, April 9, 2011

Weighted Blankets: Autism Q&A - and a Give Away!

A reminder, it is now too late to enter the Weighted Blankets: Random Drawing! The drawing was in 2011. 
I want to thank you, Eileen Jackson, owner of DreamCatcher Weighted Blankets, for answering these questions. She has also offered a blanket to one drawing entry. Be sure to click the above link to enter with a comment to my previous post on the topic.

Your website (http://www.weightedblanket.net) offers a lot of information about weighted blankets. I recommend people visit the site to read about weighted blankets in general and DreamCatcher blankets.

Q. You have an autistic son, according to the DreamCatcher website. How did you discover weighted blankets helped him?

Our son, Cody, was diagnosed with classic autism shortly after his third birthday. He struggled for years with sleeping and at age nine was still waking every few hours each night. We were not willing to put Cody on medication and our Occupational Therapist mentioned trying a weighted item, as there were a few studies showing that there was some success with children on the spectrum using a weighted vest to help calm them.

After searching for a product that would work for our son to help his sleep issues and not finding any on the market that we could either afford or were comfortable letting him use, we made his first weighted blanket. I was skeptical that it would work and more than pleasantly surprised when it did work the very first night we tried it. He has been sleeping with a weighted blanket ever since and will be 18 years old this year, still on no medication.

Q. What is a weighted blanket? Some blankets and quilts I've seen are filled with heavy "microbeads" while others use a series of round weights. What is the DreamCatcher blanket design?

A weighted blanket is a heavy blanket used as either a calming tool or for sleep. The shortened version of how they work is that the pressure the weight supplies releases serotonin, a calming chemical in the body. It is based on Temple Grandin's theory used to develop her "squeeze" machine.

Those purchasing a weighted blanket need to be very aware of what is used to weight the blankets. There are some very inexpensive blankets on the market filled with things like stone, aquarium gravel, corn, rice, lead shot, etc. that will not be useful for long. The "microbeads" you mentioned are a polypropylene material and there are also different types of them on the market, some are recycled from things like old milk jugs and car batteries, which should never be used in a weighted blanket. Not all poly pellets have a high temperature rating.

The pellets we use at DreamCatcher's are called PolyPro Pellets and the highest quality pellet on the market today. They are a US-made product, non-toxic, non-porous, have never been used prior, and have a temperature rating to 600 degrees, which makes these blankets an easy care item that can be machine washed and dried in high temperature. We have many hospitals and long-term care facilities, which have high sanitation control standards, using our DreamCatcher weighted blankets.

Q. Can adults use weighted blankets?

Adults certainly can and do use the blankets. In addition to smaller blankets for children we make our blankets in twin, full/double, queen and king size, and also offer custom sizes if requested. I use a full-size weighted blanket to help me sleep and all of our employees now use one too.

As I mentioned before, we have many hospitals and long-term care facility using weighted blankets. We have been contacted by numerous psychiatric facilities that are working on restraint reduction programs and the DreamCatcher blanket is a major tool for them to meet their goals in reducing restraint use on their adult population.

In addition to weighted blankets being used in the ASD population, we have adult clients with a variety of conditions that find a weighted blanket helpful in reducing anxiety or getting a good night's sleep. Some of those conditions include: bipolar, PTSD, panic attacks, fibromyalgia, restless leg syndrome, Tourette's syndrome, general insomnia, dementia, menopause, Alzheimer's disease, cancer, or any type of anxiety-producing condition.

Q. On your site, you show a variety of fabric choices. (I personally like the marbled blues and purples.) What do you look for in a fabric so it is both safe and sensory-appropriate for an autistic person? I hate "rough" fabrics, for example.

Weighted blankets are a health investment and we believe your fabric choice is just as important as getting the correct size and weight for a blanket. DreamCatcher Weighted Blankets is unique compared to all other weighted blanket manufacturers in that we offer any type of fabric in addition to patterns and colors, for a custom weighted blanket.

Our choices include but not limited to, cotton, flannel, poly fleece, cotton fleece, minkee (softress) fleece, cotton chenille, washable satin, and washable suede. We also offer organic and fire retardant fabrics. We will even let you send us your favorite fabric and make a weighted blanket of it. For example, some people want a high thread count sheet for their blanket ,which is fine. The only thing we try to do is steer our clients to the washable fabrics for ease of care. The purpose of a weighted blanket is to give weight without being too warm. For example, many people on the autism spectrum are what I call " hot-blooded," my son is, and he needs a blanket using a cotton on both sides so he does not get too warm. We don't offer a poly/cotton blend because it can be rough or scratchy, but some people like that texture and it can be used if requested.

Q. Many children (and adults) are "attached" to blankets. What tips do you have to ensure a good blanket lasts? Anything we should avoid?

We have a blanket exchange program where people can exchange an old blanket and receive a partial credit towards a new one. We have blankets coming into the exchange program now that are four or five years old and our patented design is holding up very well.

DreamCatcher weighted blankets are made with multiple layers of fabric. The inner layers are 100% cotton, which adds durability but not warmth. We use an industrial strength thread that holds up well with high temperature multiple washings. We make blankets weighing anywhere from 2LBS up to 50LB king size and use a DLS (double lock stitch) technique on those blankets that have more weight per square inch, for example a 30LB full blanket would be made using a DLS stitch.

When looking for a weighted blanket we recommend avoiding any blanket using a weighting material that is porous or organic in nature, for example stones, aquarium gravel, rice, or corn as these items can not be cleaned well and will mold or decompose and may attract insects, which shortens the life of the blanket dramatically.

A blanket should always be made with multiple layers of fabric to secure the weighting material and to add to durability. We recommend avoiding the use of poly fill in a weighted blanket. Poly fill will add too much warmth in most cases and tends to lump up inside a weighted blanket after multiple washings. More importantly, blankets made using poly fil may also pose a suffocation risk to younger children.

We recommend avoiding any fabric that is waterproof. Waterproof fabric is not breathable and is also a suffocation risk. Our hospital customers who might benefit from a waterproof fabric for clean-up purposes choose not to use it because of the high suffocation risk associated with it.

Q. My grandmother, mother, wife, and sister-in-law enjoy quilting. Your site mentions that you can use a custom quilt top. How does that work, for those interested?

We are happy to use a handmade quilt top for a weighted blanket, they turn out beautiful and are so special to the person who receives them. As each quilt top is unique, anyone interested should call us so we can personally ask and answer questions in deciding how to fit the quilt top into the user's needs. We also have a longarm machine so we can make the quilt top look quilted if requested.

Q. How long have you been sewing? Do you also have other crafting interests?

I have many interests, but because my son is home-schooled and my husband and I are his full-time caregivers there is not always a lot of time to pursue those interests.

I have been sewing for over 40 years and must admit that while I designed and started DreamCatcher's sewing all the weighted blankets, we have eight employees now, working Monday through Friday. I don't personally get the chance to sew on the weighted blankets except during our Christmas season when we often put on a second shift.

I do enjoy quilting, sewing in general, gardening, oil painting, sightseeing (we live in Montana), hiking, fishing, etc.

Q. Your son is now a teenager, which can be a special challenge. I know readers with young children worry about issues of older children with autism. Would you mind sharing a little about those challenges?

I'll have to be careful not to write a book here. Cody is mostly non-verbal; he has some speech but it is difficult for him. That is a huge challenge, of course, because it is frustrating for him to know what he needs and not able to express it. There are many behaviors that arise from not being able to communicate. We help Cody work through those behaviors daily and are always trying new ways to help him communicate. The iPad is turning out to be a great tool for him in that respect.

I think the main concern all of us are worry about is, who will watch over our special needs adult children if at some point as parents we can't.

We are personally struggling with that question right now. My husband and I are fortunate to have an older son and eight grandchildren who might be willing to oversee Cody's care in the future. Our number one goal and hope for Cody is to make sure he is happy. For him that means working on his computer and playing his keyboard and working on life skills that will help him in the future. Cody will always need assistance in some form or another.

I speak with a lot of parents every day because of the weighted blanket business. Over many years, the common bond with all of us is the frustration with the lack of help, the struggle in getting what little help there is, and so many unanswered questions on how or who can help.

My advise is always to follow their gut when deciding on the many issues faced each day with raising a special needs child. The "experts" in the field, in my opinion, can only be "experts" if they care for or have cared for someone on the spectrum seven days a week, 24 hours a day, because each minute can be and usually is different.

We personally have had plenty of "experts" steer us wrong when Cody was younger. We also have had many professionals help us. So the important thing is to gather all the information you can from as many sources you can, to make an informed decision about what is right for your child and your family. For example, our choice to not medicate Cody and homeschool would definitely not be the right choice for another family.

As hard as it is, at the end of the day, parents need to try and relax and not try to please anyone else but themselves and their children with special needs. Your family and the kids' happiness is what is most important.

Please let me know if you have any other questions, Dr. Wyatt. I look forward to hearing who your winner is and also hope you would accept a weighted blanket because we do appreciate all the time you have committed to this project and your blog in general.

Thank you,
Eileen Jackson
DreamCatcher Weighted Blankets
P O Box 252 * Stevensville * Montana * 59870

www.weightedblanket.net
dreamcatcher@weightedblanket.net
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Tuesday, April 5, 2011

Weighted Blankets: Thoughts and Give Away!

When I was asked if I had an opinion on weighted blankets by the owner of DreamCatcher Weighted Blankets, I admitted that I don't really know much about the research on weighted blankets. However, I also admitted that I pile blankets and comforters on my bed. I happen to like quilts, comforters, blankets, and pillows. The more, the better.

I'm not comfortable telling readers that weighted blankets or any other product "helps" children and adults with autism. I have no idea. What I can tell you is that I like to burrow under a nice pile of warm blankets and quilts every night.

Disclaimer: DreamCatcher is offering to give away one weighted blanket to a reader of The Autistic Me. If you are interested, add a comment and I'll enter your name in a random drawing. On the first day of May, I'll post the name of the winner so he or she can contact me directly. If you want to learn about DreamCatcher's products:

DreamCatcher Weighted Blankets
P O Box 252 * Stevensville * Montana * 59870
Website: www.weightedblanket.net
email: dreamcatcher@weightedblanket.net

Dr. Temple Grandin has designed a "Hug Machine" to help her relax (http://en.wikipedia.org/wiki/Hug_machine). Other autistic adults have also written and spoken on the topic of deep pressure, weighted blankets, and water pressure offering comfort. Dr. Dawn Prince-Hughes has written that she finds water relaxing, something many parents of autistic children tell me is common.

Personally, I don't like swimming -- I fear deep water because I'm partially paralyzed and can't swim well. I'm okay with a nice warm bath, though I'm eager to get out of the water after five minutes. However, I love a strong shower. We used to have one of those "pulsating" shower heads. That felt great when my shoulder was sore.

Massage has helped me a lot, mainly because my legs, back, and arms cramp. I was in a back brace for many years and my lower back is in near-constant pain. For some reason, pressure helps. I don't understand how it works, but pressure and heat definitely help my muscles. I don't like the "gentle" and "soothing" massage techniques. When my muscles are cramped, it seems some sort of deep-tissue massage is needed.

But, more than a warm shower or a massage, I like my quilts. My mother and grandmother have made numerous quilts for me over the years. From lap quilts to complete full-size quilts for the bed, they are prized possessions. Even sitting on the couch at night reading, I love to have a quilt over my lap. Generally, a cat is also included, adding a bit of weight and warmth.

Who doesn't like to remain in a warm bed? As long as I can remember, I have "mummy wrapped" myself at night. I attempt to block every bit of light from my eyes and secure myself in the sheets and blankets on my bed. I also place pillows along my side, offering additional pressure and warmth. It might not be a Hug Machine, but the principal is the same.

As I've admitted, I'm not certain if weighted blankets and quilts appeal to most people with ASDs. If you have any personal experiences, please feel free to comment on this post. Maybe it is merely a personal preference for the added weight, but I definitely prefer a heavier quilt over a thin sheet or blanket.

Browsing the DreamCatcher website, I did notice the marble colors. I like these a lot: http://www.weightedblanket.net/marblecottons.htm

If I end up trying one of these blankets, I'll let readers know with a review. Admittedly, I am curious. Should I consider a weighted blanket in addition to my quilts? Or maybe have a quilted top stitched to a customized blanket? Let me know if you have an opinion. And, yes, don't forget that I'll add names to the sponsored drawing.

Monday, April 4, 2011

Writing and Autism: Organization

There are two types of organization we should address for students struggling with academic writing assignments: process organization and document organization.
Reminder: This blog entry is part of an ongoing series. Writing-related topics I am addressing include: organization, audience analysis, supporting arguments, and mastering genre norms. If you have specific questions be sure to ask and I'll try to address them.
I am addressing "academic writing" in these posts, though I might discuss "creative writing" and students with special needs later in this series of essays.

Personal Organization
High school teachers tell me that a lack of personal organization is the single greatest challenge for their special needs students, as well as most high school students.

I am not organized. I know my colleagues would disagree, but my natural state is a complete lack of focus. Each day is a struggle to stay on task until something is finished -- and too often I end up bouncing from distraction to distraction and not meeting self-imposed deadlines. Because I know I'm "Driven to Distraction" (quoting a well-known book title), I had to develop routines to keep me focused on my writing projects.

Curiously, many of the best writers I know fall into one of two extremes: those with laser-like focus and those, like me, lacking focus. I'm fortunate enough to work with special needs students, their families, and teachers. Most of these students also fall into the "easily distracted" category. Hopefully my tips for organizing help these students as well as many others.

Many of us imagine that we can multitask far better than any research suggests. Most research has found we do more things poorly when multitasking, but we believe we're doing various tasks well. Doing one major task at a time remains the best way to perform that task. (An exception that I have located in the research: listening to instrumental classical music while working improves focus for many people. Notice, that's instrumental music, not music videos on VH1 Classic.)

Distraction number one in my life is the Internet. I'm not going to claim that I was more focused before having a constant, high-speed network connection. Then again, I've had high-speed network access since 1987; the last time I didn't have such a distraction was in high school.

- Planning on Paper
To deal with most distractions, I turn to working on paper. Yes, paper. While typewriters, computers, and dictation software have made it easier to write, nothing beats the distraction-free nature of blank paper and a pencil. Could I outline and brainstorm faster on a computer? Maybe, but that also assumes I wouldn't end up distracted by tangential research.

One of the projects on my to-do list is updating a guide to desktop publishing. I am fascinated by typography, so I ended up on a multi-hour tangent last night researching a set of font designs. The research had nothing at all do to with what I should have been writing. Yes, the information might add interest to an essay, but the research was inessential to the project.

On paper, I would make a note to check a few facts and then keep writing. I wouldn't find myself lost in a tangled web of research, literally, if I had been writing on paper. Losing focus means losing time, which eventually leads to a panicked last-minute rush to complete projects.

Though it might seem wasteful to many people, I keep the draft notes for each project on its own yellow legal pad. After I transcribe the notes and other scribblings from a pad to the computer, I tear off the pages and file them away, keeping many of the originals. The pad is then free for another project. I have to avoid mixing projects or I never finish a single one.

As a student and teacher, I keep one spiral-bound college-ruled notebook per class. I've tried the thicker multiple-subject notebooks under the theory that one notebook would reduce the risk of losing my notes. The real result: I flip through pages, get confused, worry about one class when I'm in another, and generally lose focus. One notebook per class works better for me. From that experience, I learned that one notebook or binder per writing project is also best for me.

- Checklists and Calendars
When I speak to teachers and students, I emphasize the importance of maintaining a schedule. Teachers and parents have to help students.

I use checklists and calendars, both on computer and on paper. Having a visual measure of my progress, as well as what remains to be done, helps me organize myself a little. I've written about the need to plan and organize on the Tameri website: http://www.tameri.com/write/process.html
Note: I will be updating the Tameri page on the writing process as time permits; it is an incomplete discussion of the process.
For an academic paper, I create a schedule that leaves more time for writing than research. I do this because I will lose myself in research. I need to spend more time writing and revising than on research. Other people need to invest the bulk of their time on research. Whatever your personal strengths and weaknesses are, make sure that you schedule time accordingly.

- Writer's Block
Stress can be its own distraction. When I have anything else on my mind, when something is bothering me, I cannot focus on anything else. Unfortunately, a lack of focus or problems sticking to my schedule causes stress. I believe that's what many people mean when they talk about writer's block: stress that halts the writing process.

The best way to avoid stress-related writer's block is to reduce the possible causes of stress. For me, this means sticking to my schedule. I realize that's easier said than done, but parents and teachers can help students with scheduling.

Once the writing starts, dealing with stress can involve using proven organizational techniques. In the next section, I'll explain how following proven structures can help students compose academic papers. Following models is what most academic and professional writing does. Reminding students that relying on models is what even the best writers do can help reduce stress.

Organizing an Academic Paper
Academic writing is highly structured, which can help students as they prepare documents. I remind students that professors and research scientists rely on structured formats, which allows scholars to focus on the content instead of the structure. When someone suggests this isn't creative, I remind them that various poetic forms are also rigidly structured -- and that doesn't stop poets from being creative.

Parents can help students by asking if the teacher or class textbook provides a model paper or at least an outline of the assignment structure. I'll be posting some of the standard formats to the Tameri website, but nothing is a substitute for whatever models and guidelines are provided by an instructor.

High school students and incoming college students might want to focus on traditional "five paragraph essay" models. There are models of these based on their purposes in most academic writing textbooks. When a student challenges me on the usefulness of such structures, I can point to the models used to write doctoral dissertations. Men and women completing their doctorates know there is a model even for this "final" academic exercise: http://www.tameri.com/format/dissertations.html

I plan to post more about writing and academic paper organization in a few days.

Brains of People with Autism Focus More on Visual Skills - US News and World Report

I have written several times about the "visual" nature of my thought process. This same topic appears in various memoirs by individuals diagnosed with autism. We write about "Thinking in Pictures" and "seeing the shapes of numbers" after being "Born on a Blue Day" (to borrow from two book titles). But why do people diagnosed with ASDs think visually? How does this affect decisions and communications by autistic individuals?

Brains of People with Autism Focus More on Visual Skills - US News and World Report
MONDAY, April 4 (HealthDay News) -- The brains of people with autism concentrate more resources in areas devoted to visual perception, resulting in less activity in areas used to plan and control thoughts and actions, says a new study.

The findings may explain why people with autism have exceptional visual abilities, said the researchers at the University of Montreal.

They analyzed data from 26 brain imaging studies that were conducted over 15 years and included a total of 357 autistic and 370 non-autistic participants.
This research is really a meta-analysis of other studies. The researchers looked at past studies to determine if any generalizations were possible. After "studying the studies" the researchers did indeed find indications that visual areas of the brain are more active, possibly at the expense of other regions of the brain.
The findings offer the "first physiological confirmation that enhanced perceptual processing is a core feature of neural organization in this population," Dr. Laurent Mottron, of the university's Centre for Excellence in Pervasive Development Disorders, said in the news release. "We now have a very strong statement about autism functioning, which may be ground for cognitive accounts of autistic perception, learning, memory and reasoning."
Maybe this helps explain the visual nature of autistic thought in some individual cases?

Saturday, April 2, 2011

Autism Awareness Day

No, I don't have a special post with cute quotes and aphorisms to mark Autism Awareness Day, which is today: April 2.

Each year I'm asked if I'll be walking, cycling, bowling, shopping, eating, et cetera, to raise money for autism awareness. That generally means raising money for one of about four or five national groups. No, we're not doing anything special. We did eat out today, but only because we were running errands.

For parents, educators, and especially people living with autism, every day is about autism awareness. Every person affected by autism, directly or indirectly, the challenges are no easier on "Awareness Day." If anything, I find the entire "Autism Awareness Month" stressful. For a month, television news, magazines, and newspapers will run stories about autism, often not improving understanding or awareness. Too often, this month means bitter arguments about what causes autism, how to best treat autism, and if there should be a cure.

A month of "news" stories about autism? No thank you. The debates are exhausting. The media stereotypes are frustrating. I tire of the "public service announcements" on radio and television, with some famous person telling us the odds of having a child with autism. One local stations runs two or three of these PSAs an hour during the night.

I'll continue working on my posts about autism and writing education, one of which should be posted this weekend.

Sorry I don't have any great words of inspiration for today.