Wednesday, December 23, 2009
As I mentioned before, my oldest son who has Autism Spectrum Disorder (ASD), was chosen as a focus child for his school for the START training program that started in September and will conclude in March or April (depending on winter weather). One child with ASD per school was chosen to be the focus child.
I'm not sure about the other focus children in the START program, but I can say my son was chosen for a particular reason. C1 hasn't been the easiest child to educate over the years, and this has been especially true since about last Spring. We did have a grace period in September when school started up this fall. At one point he told my husband and I that he loves school and that it was the favorite part of his day. (I believe he was happy to have some structure after summer break concluded.)
Around mid-October my son had a complete attitude change about school. All of a sudden he "hated it" and started to flat out refuse to do work. My husband and I were both called in to help out on the worst of days.
We have several theories as to why C1 started to hate school, but cannot be really certain what caused such a complete attitude change. It could have been that the novelty of the new school year wore off. It could be that he was reacting to the weather change that came about mid to late fall. Or it could be the stomach irritating bactrim we were giving him for a kidney condition and have since discontinued.
It's hard to tell. All we know for sure is that his refusal to do his work became our number one concern in October. His behavior escalated to the point he started to tear the room up when challenged.
Thank goodness for START or we be could very well be in the middle of a nightmare right now in terms of school. Fortunately, around the time his behavior started to deteriorate, the START trainers presented a module on Educational Strategies.
We learned how to use breaks, special interests, and gadgets such as the P-touch (for typing up work instead of writing) to inspire a child to comply in the educational setting. C1's teacher, who has worked so hard to help him, created a froggy basket (my guy is all about the froggies) for him to dig into during breaks, gave him the P-touch we received at the end of the module training, and put a bean bag chair by his desk.
The good news is that my son stopped being disruptive in the classroom as soon as his teacher put some of the strategies in place. The bad news is that despite liking the P-touch, he still refused to do work for several weeks in small group settings. He ended up spending a lot of time in the bean bag chair.
We've since had Module 3 which focused on Behavior and learned even more things (which I hope to discuss in a future post). Further, my son's special ed teacher, also was able to have the behavior consultant for our special education district come and observe my son. The behavior consultant was also able to provide very good ideas during a team meeting I was invited to attend.
Ironically, my son did his all his work with very little intervention the second day the behavior consultant observed. It might be that my holiday loving son knew he was being watched or it might be that he was just excited that Christmas break was just around the corner as there were only two more days to go at that point. Whatever the case, I hope C1 will continue to be a willing and compliant student once school starts up in January. My fingers are crossed!
Tuesday, December 15, 2009
I haven't read this particular book, but I love the title and hope to read it someday. I have, however, read another book by Kluth and really appreciated it. The trainers at START mentioned that one too. The title is Just Give Him the Whale, which I blogged about (see post here) previously. That book is about working with the student's special interest in order to encourage productivity in the classroom setting.
I was grateful for the attitude of the START trainers and the fact that they included these readings along with general information about autism and Asperger Syndrome. I'll admit that working with people (as a parent I'm thinking about my own child) on the spectrum can be baffling and overwhelming at times. There are often little and big problems that come up during the school years.
Part of the stress comes from the fact that even verbal students with ASD have a hard time communicating about what it is that is bothering them. This can make solving a behavior-related problem very difficult. Even though my own son with autism/PDDNOS is conversational, it sometimes takes awhile to get to the root of an issue.
Sometimes problems are really easy to solve once understood. In one case (that I learned about during training) a nonverbal girl refused to go out to recess because her visual field had been changed. Her mother figured out the problem immediately when she saw that the mats in front of the door leading to the playground had been thrown out of alignment. Once the mats were aligned (a visual field issue), the child went outside for recess without any difficulties.
Despite the difficulties, however, students with ASD are worth getting to know as people. Many of them do have the ability to make their educators and therapists smile by sharing their unique view of the world. Sometimes the students (and not just the children with Asperger Syndrome) have talents than can astound people. My own son is a navigational expert. I've been known to miss exits on long distance trips. Usually my guy figures out my mistake before I do as he notices immediately when I've messed up. (I try to reminder things like that when facing confounding situations with my son.)
So I think START is right on track when they tell educators and therapist to use those special interests and to take time to get know the student with ASD. A positive attitude when working with children with ASD is essential to being an effective educator, administrator, therapist or parent.
As a parent, I'll admit it's not always easy to work with a child when he or she engages in meltdowns or inappropriate behaviors. We (participants) were told not to take meltdowns/behaviors personally and to make sure we don't allow our own frustration to add to the difficulty of the situation. I realize it is sometimes difficult to do that, but once a child is understood (and appreciated), it makes the extra effort all the more worthwhile when a problem is solved.
Note: Posts about my own 'focus child', educational strategies, and problem solving are coming up soon.
Wednesday, December 9, 2009
The teams that are built to support any student with an Individualized Educational Plan can be large. The size of the team depends on the needs of the student. My child's team that attends START includes me, his special education teacher, his general education teacher, his principal, his occupational therapist, and his speech therapist. He also has a social worker and a physical therapist.
I'm fortunate that I have a team that gets along well, but I know that we all have heard stories where this isn't always the case. There can be personality conflicts or conflicting ideas of what should happen. Or, even if everyone gets along, a meeting can be run so inefficiently that nothing is accomplished. Hence, it is in the best interest of everyone that meetings go smoothing in order to identify and solve problems interfering with the student's learning process and accomplishment of goals.
That is why we were trained immediately in Meeting Mechanics, which was a primary focus for Module 1. We learned problem identification, problem specification, brainstorming, clustering/prioritizing, identifying implementation variables, and assigning responsibilities.
We were taught to perceive all team members as equal regardless of position and that "all ideas are good ideas" (well at least until they are fully deliberated by the team. The "all ideas are good ideas" rule is meant to give everyone a chance to present their ideas to the team without feeling intimidated. We were also taught to avoid sidebar conversations, which are little conversations in the group that doesn't include everyone.
I realize this post doesn't fully cover or explain the notion of Meeting Mechanics, but what I do want to point out is that this system does seem like an efficient and fair way to run meetings. I believe that all teams working to support a student with autism should be trained in this or something similar to make sure that the student's needs are addressed. So far, I am impressed.
Wednesday, November 25, 2009
Holidays such as Thanksgiving and Christmas are often stressful. This is especially true for families who have one or more members with Autism Spectrum Disorder. Things change. Expectations may or may not be met. Chaos prevails. So instead of doing a traditional gratitude post, I'm going to try and lighten up a bit. Hopefully my list things to be grateful for will at least make you smile. Anyway, here it goes. I'm grateful that...
The boys no longer play Humpty Dumpty in the house--with eggs from the refrigerator.
I don't have to capture renegade crickets (toad food) with bare hands very often.
The little frog I accidentally sat on last summer survived, and that I didn't traumatize my pint-size animal lovers.
Our six year old once mistakenly called a tuxedo a "torpedo.
Our 11 year old with ASD put an old fashioned metal vegetable strainer on his head today and called himself "the Tinman."
I didn't break or even hurt a toe when I knocked over a heavy, folded up card table in the basement this morning.
I can appreciate my husband's fascination for all things Sasquatch.
I didn't feel too dumb when my older son was right about that red thing under a turkey's chin being called a wattle and not a "gobbler" as I once thought.
I don't have to try and pass off processed turkey loaf because other much appreciated relatives will be doing most of the cooking.
My husband is good at calling out Bingo numbers for my side of the family's annual game--complete with small wrapped prizes for the winners.
We know better than to give our elderly cat tuna or any kind of fish. Don't ask why or you'll be sorry!!! If she's lucky, she'll get a can of turkey cat food.
I have extra special friends that I can laugh with through life. Happy Thanksgiving everyone.
Thursday, November 19, 2009
Knowing who all was attending, I figured this to be true. We had seasoned therapists, social workers, and special education teachers who work with kids on the spectrum regularly. I figure these professionals would most likely be classified as having at least an intermediate level of autism knowledge--if not advanced.
Then we had regular education teachers and school administrators who may or may not be novices. Of all the people attending the trainings, I'm pretty sure that this is the group that has had the least amount of contact with people on the autism spectrum. This is the group I figure might benefit the most from the trainings, though honestly I think every single person attending probably can learn more and benefit more.
The presenters did not define the levels for us, but I'll attempt to do that in the next few paragraphs. In the novice group are people who might have an idea of what autism is, but have difficulty defining it. They may also not realize that the symptoms of the disorder may range from mild to severe, depending on the individual and may feel uncomfortable around someone with ASD.
Those in the intermediate group already know about the basics of ASD and the issues surrounding the disorder (vaccines, a lack of opportunities for adults, stress and special-needs parenting, etc.). They may have read a massive amount of literature about autism, but do not have much experience in relating to people on the spectrum (other than a relative with ASD). In other words, they don't quite qualify as "experts" yet.
I figure those with advanced knowledge are the ones who have written books (academic style, not personal experience style) and can conduct trainings such as START. They most likely have taken university-level courses on the topic or have had extensive training in conferences. Most importantly, they may have worked with people on the spectrum on a regular basis in either a volunteer or professional capacity.
As for me, I am part of the parent group whose members could fall into any of the three levels mentioned. Although I have a son (age 11) with autism and have blogged about this topic for two years now, I feel like I still have a lot to learn. I certainly do not feel like I'm at the advanced level, though I've been competent at defining ASD and identifying the issues surrounding it for awhile now.
I find that with autism, there is always something more to learn. I'm definitely looking forward to finding more about autism and how to reach individuals on the spectrum. The next two modules (3 and 4) are about Behavior and Peers respectively.
As far as behavior goes, I know a little bit on how to help my son avoid unacceptable behaviors that will hinder his ability to succeed in the world. However, I am looking forward to what the presenters have to say on the topic. As far as peers go, one of my particular weak spots is talking to children about autism spectrum disorder. I'm hoping that after the two training sessions about peers (Module 4) in January, I will be much more adept at this skill.
So far, I'm pleased with START. The trainers approach their topics in a positive manner. So far the group of presenters from START regard the potential of people with autism positively while also using a straightforward, but positive approach in encouraging everyone attending to learn what they can--regardless of the what level one is at.
Note: This is just one post from Module 1. I'll probably post one or more related to the topics covered before moving on to Module 2 (Educational Strategies). In the near future, I'll be publishing posts about autism, teamwork, and positive thinking.
Monday, November 16, 2009
September 17: Orientation (8:30-11:30)
September 30 and Oct 1: Autism Overview/Teaming (Module 1)
November 4 and 5: Educational Strategies (Module 2)
December 2 and 3: Behavior (Module 3)
January 11 and 12: Peer to Peer (Module 4)
February 10 and 11: IEP (Individual Educational Plan) Development/Implementation (Module 5)
March 3 and 4: Systems Change through Coaching (Module 6)--effectively delivering educational supports in the Least Restrictive Environment (LRE).
April 12 and 13: Weather Make-up Days (A necessity in planning for Michigan winters, I'm afraid.)
Author's Note: As you can see by the calendar, Modules 1 and 2 have already been presented. I will try to give a summary of both Modules (and perhaps some related posts) soon. This Thursday I will speak to my support group about START and explain what it is about.
Tuesday, November 10, 2009
I've been on autism-information overload lately, which ironically is why I haven't blogged for awhile. Last week I participated in two-full days of a grant-funded autism-training program (based out of Grand Rapids, Michigan) called START (STatewide Autism Resources & Training).
The days run from 8:30 a.m. until 3:30 p.m. It's being held in Ithaca, Michigan which means a one-hour drive round trip. The two day per month program started in September and will end in March or April depending on if there will be cancellations due to severe winter weather here in Michigan.
Although the time investment is huge, I was delighted that my son, C1, was chosen as his school's focus child. The idea behind the program is that teams from the school system learn to apply the information provided to help the focus child and then adapt it to help other children on the spectrum in their schools. It is my belief that this program will have a long-lasting positive impact.
The trainings are based around teams from each school (two or three districts are represented). Teams are formed around one child with autism from each school. The sizes of the teams vary depending on age (high school students have huge teams) and needs of child (amount of therapists needed). Parents are highly encouraged to participate along with principals, special education and regular education teachers, school therapists, and sometimes paraprofessionals.
Anyway, the good news is that I have a lot of valuable information to share right now, and will also have a lot more as the training progresses. The drawback is that I have to find the time to sit down and share it. My family is facing a possible huge, but positive transition in life (more on that later), so I've been busy trying to prepare for that as well.
Please be patient with my blogging gaps. I'll try to sit down and type up several posts at a time. The idea will be to schedule one post at a time for publication. Hopefully, I'll be able to publish more than one a week.
Friday, October 30, 2009
Thursday, October 22, 2009
Thursday, October 15, 2009
I hadn't planned on including webcasts in this series but did so in order to keep this blog updated regularly. I was grateful for the opportunities to do so. Speaking of that, here is a link to an online video. According to Alexandra Wharton, the vice president of Newsy.com, "the video summarizes recent studies on the number of those affected with autism and the controversy surrounding apparently growing numbers." Please note that I haven't had the chance to view it due to a shortage of time and some technical difficulties associated with blogging from my home.
Also, a big thank you goes to Jon Gilbert for sending me this link about the documentary Living the Autism Maze, a documentary about families in Vermont. It came out in 2005. It can be ordered by calling a toll free number found at the site.
On a final note, here are two films related to autism that were released in the last year: Mary and Max (a claymation film) and City Rats. I haven't seen either film, but both look promising. They both have yet to be released on DVD.
Monday, October 5, 2009
Back then any mom with a child with autism was at risk for being called a "Refrigerator Mom." According to the popular thought of the day, "Refrigerator Moms" were cold mothers who caused the child's autism by not being able to bond with them. The treatmentback then included taking the children away from their parents and/or isolating them from everything including toys. Ugh. Did I already say I'm glad I became a mom of an autistic child diagnosed in this century?
The chief proponent of the refrigerator mom theory was Bruno Bettleheim. He wrote The Empty Fortress: Infantile Autism and the Birth of the Self, which I suspect would be a painful read for most parents. The scary thing is that (at the time) the world embraced Bettleheim as the expert on the topic of autism in children. This is the quote in the documetary that gave me the chills:
"[Bettleheim said] mothers were responsible for making children autistic and the world fell for it."
Fortunately for moms who are currently seeking out help for children with ASD, the world has mostly moved on from that view. This is reflective in the documentary Refrigerator Mothers, released in 2003 by Kartemquin films for the PBS Point of View series. The director of Refrigerator Mothers let the mothers tell their own stories. Most of the moms in the film mentioned that they took their children to doctors hoping to find help. Instead they ended up getting a label thrust upon them. One even said, "instead of help, we got Bruno Bettleheim."
Another mom revealed that she still cannot get rid of that feeling of guilt that was placed upon her. This mother seemed to be doing Ok, but the sadness in her eyes made me wish that the Refrigerator Mother theory never came about. It made me sad and even a little angry that there are many, many mothers who had autistic children in that era who are still suffering as a result of having this label placed upon them.
However, I must say that despite the suffering, I couldn't help but admire all of the mothers in the film for their strength and courage. I'm glad these moms had a chance to tell their stories and I believe they were glad as well (maybe even relieved) to be able to tell them. If you haven't already watched the film, I'd highly recommend that you do.
Monday, September 28, 2009
Autism Blog Author's Note: Rethink Autism is a business offering ABA based home therapies. According to their mission statement (click on first link), they try to keep the therapy affordable for families. Speaking of affordable, they offer sample lessons plans on their site. Titles of these plans range from "Imitating a Peer," to "Solving Single-digit Math Problems" to "Helping Others."
Thursday, September 24, 2009
Intermission time for my series!
I interrupt my series on movies, documentaries, to post about an even more direct portrayal of autism--autism as discussed by parents who have children with autism spectrum disorder (ASD) or individuals on the spectrum. Sometimes it's just best to get the story of ASD straight from the source.
A year ago on September 23, my friend Ms. Casdok launched Faces of Autism, a great site that features a description of a person with autism, a photo and most often a link or two. It's a blog that features a diverse array of people. If you go there, you will see that both genders, all ages, all ethnicities, and all parts of the spectrum are represented. Twins and even a set of triplets have been featured.
My good blogger friend launched the blog just in time to celebrate the birth of her favorite person in the world--her son, C, who is 21 today, September 24. His photo, along with one of her little nephew, kicked off 2009 as her New Year's Day post. As for me and mine, I am proud to say that my guy, C1 (then described as the Vowles Viking) was in her first batch of posts as seen here.
Ms. Casdok will post multiple times about the same person--particularly on a person who is a growing, changing child. That said, I'll have to get busy and send in another photo (will link to it here when possible) because my fourth grader has grown a lot since the first day of third grade, when the last photo was taken. Anyone interested in submitting a photo should submit it via email to her address as listed on the right top hand corner of her blog. I hope that parents or individuals that see this will consider submitting a photo to her site. It's great to see who is all out there.
As for movies, Ms. Casdok has another site called Mother of Shrek. She has a great list of movies at that site that are related to autism. You can see the list here. The post was originally done April 2008, but she has updated it to include 2009 films.
P.S. The Faces of Autism launch date is easy to remember because September 23 is my birthday too!
Tuesday, September 22, 2009
"FREE Teleseminar: Inner Brilliance- Autism, ADHD, and ADD - Interview with Suzy Miller
I have put together a free teleseminar series for busy parents. For my next interview, I am honored and pleased to bring Suzy Miller to you!!
I heard an interview Suzy gave on ADD, ADHD, and autism and was so struck by her approach that I simply HAD to have her as a part of the series! Suzy looks beyond the labels and limits that are placed on our kids. She looks at what is possible for our kids and looks at their INNER BRILLIANCE! She is the author of Awesomism: A New Way to Understand the Diagnosis of Autism.
Suzy presents to international audiences and writes for publications in the areas of energy awareness, new children, the power of positive communication and advanced "education" systems. She started Blue Star Brilliance in 2005 as a company dedicated to advancing the consciousness of adults regarding the gifts, needs and potential of their children.
At least 90% of today's children are experiencing and offering higher levels of awareness. Some are offering that consciously, some spontaneously participate without consciously knowing what they are doing and some are being bumped around by these new energies without much awareness at all. Suzy believes that through compassion and awareness these children can learn about their gifts and experience the energy in a whole new way. Suzy is committed to breaking the molds that bind us to a limited perception about ourselves and our children.
The teleseminar is Thursday, September 24th at 8PM EST (United States). "
Note from Autism Blog author: I am not always able to create a post when someone emails me about a product, book, event, directory, event, etc. However, this particular teleseminar seems to embrace the same attitude about positive thinking and autism as I do. I believe my readers, many of whom are parents, will benefit from this opportunity. To view, one must register (scroll down to yellow box at the bottom of the page) with your name and email address.
I'm not sure I'll be able to watch this because I'm in the midst of planning a local, September 26 picnic for autism families. However, I'm hoping at least some of my readers will be able to benefit from the seminar. If you get a chance to see it, please post your opinion in my comment section. The interview will last 45 minutes with 15 minutes set aside for a question and answer session. If registered at the site, one can get a second chance to see the seminar if unable to see it aired live.
Monday, September 14, 2009
It's a romantic comedy about a man with Asperger Syndrome (Hugh Dancy) who has a relationship with a neighbor, Beth Buchwald, (Rose Byrne) who is not on the spectrum. Adam was released by Fox Searchlight Pictures, which specializes in Indie and British Films. The film was not widely distributed, which explains the necessity of my hour-long trek.
Was the film worth the trip? Yes. My female chic flick buddy and I both liked the film. It had enough strengths to make the drive worthwhile. Dancy, who apparently didn't know the film was a "rom-com" when he accepted the part, gave a great performance as Adam Raki.
What I liked about Dancy's depiction of Adam is that I felt that I saw the character as a person first and Adam's disorder, Asperger Syndrome (AS) second. Of course that might of had as much to do with the script by writer and director Max Mayer as it did with the acting. In an interview (as seen here), Dancy said he liked the fact that AS wasn't mentioned or even hinted at immediately in the script. I liked that fact too. Viewers were given a chance to know Adam as an individual before the label was applied.
Another big strength of the film was the soundtrack. It had a lot of smooth, inspiring songs that were gentle on the ears. In other words the soundtrack was sensory friendly, which is nice for viewers on the autism spectrum who may have sensitive hearing.
The film's biggest weakness is its ending. While I liked the fact that it wasn't a typical Hollywood ending (again, this is an indie film), I wasn't sure I believed it. I won't reveal everything, but I will say the character made a huge transformation (that we didn't really get to see) in the span of a year. All viewers are able to witness is what happened that might have inspired a humongous change in Adam.
In a year's time and in what seems like one impossible, gigantic leap, Adam goes from being a person who has always been dependant on someone else (the character we see for most of the film) to someone who has adapted to life with AS and is living as an independent, successful adult. Don't get me wrong. I know adults with AS who have adapted and are successful. What I'm saying is that I think I only would have believed in Adam's transformation if I would have been actually able to see the progress as it happened bit by bit.
All the things I saw him struggle with like being successful on the job or correctly reading social cues just seemed to disappear as if by magic. A few characters in the film, mainly Beth's dad, even saw Adam as childlike (an aspect viewers in the autism community may become uncomfortable with). At the end of the film, it is apparent that all the characters around him respect and accept Adam as an adult who has adapted. Is it possible for someone to go from the developmental age of say nine or ten to the developmental age of nearly 30 in a year? I'm not so sure about that.
A nit-picky point was that I was disappointed in Beth's character. Rose Byrne aptly portrayed her, but I was expecting a character that was a little bit quirky. The tagline said "a story about two strangers. One a little stranger than the other." I guess I incorrectly inferred that Beth would at least be a little bit odd.
Instead Beth turned out to be a teacher and aspiring writer who didn't seem the slightest bit quirky. Oh well. There already is a romantic movie about Asperger Syndrome with two quirky characters. The title is Mozart and the Whale. I'm thinking the movie Adam should have been called Einstein and The Miracle Worker instead.
Extra Notes: Although I ended the review on a slightly snarky note, I really did like Adam despite the flaws. I think the film is worth viewing. In addition, I'd like to point out that Adam won the Alfred P. Sloan Prize for "an outstanding feature film focusing on science or technology as a theme, or depicting a scientist, engineer or mathematician as a major character" at the 2009 Sundance Film Festival.
Tuesday, September 8, 2009
As for higher education, I realize that not everyone on the autism spectrum will be able to go to college, but I think we'll see more people with ASD attending colleges in the future. I just hope that higher education will be ready and willing to accommodate the probable influx of people with ASD who will seek out degrees.
College educators and administrators should realize that like the character of Rudy, people with autism and Asperger syndrome and others with disabilities, can attain similar goals against similar odds. In my opinion, we have a long, long way to go in terms of autism and education. This includes elementary education, secondary education and higher education. Like Rudy, we need to ignore the naysayers, set goals and then obtain them.
Last but not least, we have Mikey, the adolescent from the movie The Goonies. This was the first major role that Mr. Astin had. He said the best aspect of playing Mikey, aside from the water slides, was going through the gates of the studio everyday to work "on the 50 million dollar film" and seeing his name at the top of a display. (Any twelve or thirteen or thirty year old would be excited about that, I believe). Of his character, he mentioned Mikey's "burning curiosity" and "reverence." In particular, he mentioned the reverence that Mikey had for "One Eyed Willie," the pirate who left the treasure behind.
Like Mikey, professionals and parents, are also looking for treasure. Our treasure is called progress. Most of us are overjoyed when our charge with autism accomplishes a long anticipated goal like being able to ride a bike, communicate a need, or even make a friend. However, we all must have the burning curiosity to figure out how to reach the individual with autism. We must find out everything we know about the topic, and also try to find out everything we can about the individual we are working with. However, it most important we have reverence for the individual with ASD while we seek out that treasure. We need to treat people with autism more like Mikey treated 'One Eyed Willie' and less like 'Sloth' Fratelli's family treated that rather unusual character.
In all, to me those three characters that Mr. Astin Played were noble individuals who achieved a goal that affected the quality of life, not only for themselves, but for the characters around them. Middle Earth was saved, The Goonies were able to stay in their homes, and Rudy inspired a stadium full of fans at a major football school to cheer him on.
As people interested in helping individuals with autism, we too can be noble and help improve the quality of life of individuals on the autism spectrum. Mr. Astin did his job by aptly bringing noble, inspiring characters to the big screen. Now, it's time to do our jobs. There is a lot to be done...
Additional Note: As a Gen X'er also born in 1971, a mom and a wife, I also identified with the actor as well as his characters. When asked of his biggest accomplishment, he mentioned his three children first. When asked of his biggest role model, he said it was his wife. Aw. How can you not love the guy? : )
Friday, September 4, 2009
I wish to wish a belated Happy Blogging Anniversary to Harold Doherty from Autism in New Brunswick. Blogging is an endeavor that requires creativity, vision and passion for one's topic. Being in a two-blogger household, I realize how challenging it can be to keep a blog running for an extended period of time. In that sense, I can really appreciate the fact that Harold has been able to regularly update his for three years.
I really enjoyed Harold's third year anniversary post, and I hope everyone, despite what your approach to autism might be (biomed, neutral, or neurodiversity) will enjoy or at least appreciate it too. If you are unfamiliar with Harold's blog, one only needs to consult the pledge found on the top right hand corner of his blog to become aware of what his views towards autism are.
Wednesday, September 2, 2009
Last year we visited a pediatric eye clinic in Williston, Vermont which I have to assume is staffed with at least minimally-trained health care personnel. It was time for Nolan and our four-year-old Madison to have their exams and the office is a solid two hour drive from our home in Rutland. For even the most patient child, this can be a long trip. So when we unloaded and found our way into the 'play' portion of the waiting room, the little ones were ready to unwind.
Nolan can get rambunctious and loud to say the least and this event was no different. When it came time to bring each of the little ones in for their pre-checks, it quickly became obvious that we should handle the observations one at a time. Lori and I were trying to be courteous to the staff since we know how he can get, so she and our older daughter took Mad in first. The office professional made a quiet comment about Nolan's clamor, but at the time I found it innocent; I don't even recall all that she said.
The doctor drew the straw that would award her Nolan and me, and we followed her into a spacious office. He was rattled and didn't care for the dark, but the Doc was patient and assured me she is familiar with Autistic kids. This was obvious by how quickly and smoothly the first check went, even though we struggled a bit to get the dilating drops in my boy's eyes. The Doc then sent us into the waiting room to let the meds do their job for a half hour or so.
Nolan was back to himself in no time; not out of control, but probably a little intimidating to anyone outside looking in. The staff member who had greeted us even came by to close the door to our section of the room; a bad omen that might explain why the little girl who wanted to come in with us either would not or could not.
After the drops did their job, each of our 'teams' took turns visiting with the Doc and she told us when she'd like to see everyone back.
"I'll need to see Madison in a year, and since his eyes are good, we'll give Nolan a break. We'll see him in two," she told us."You mean, you'll be bringing him back to the office?" asked the staff lady. I thought she was joking."
Yes," I told her. "As a matter of fact, I'll be leaving him in your office." I was grinning; she wasn't any more.
"Well, call ahead," she chirped. "I'll take that day off." Maybe I'm just Mr. Innocent and wouldn't want to think that someone was being cruel on purpose; especially not someone in the medical profession who has seen all kinds. I shrugged it off.
Apparently, she had been serious and was under the impression that we are raising a misbehaving child. As we were donning our jackets, she came up behind me sheepishly and said, "I am sooo soooory. I had no idea he was Autistic."
Not 'was'; 'IS'. It didn't go away since we got to the door. And had someone queued this ignorant woman in, because we did not.
In typical 'Jon' fashion I only said, "Yes, he is." I didn't ream her out; I didn't scold her or call her a name or even imply that she was an ignoramus. I just let it go. Maybe I'm sick of it. Maybe I didn't see the point. Instead, we talked about Autism t-shirts that explain the condition and the dumb things some people can say. I bit my tongue.
Okay, here's the scoop: Nolan is a little boy who deserves to experience everything you do: restaurants, playgrounds, malls, and even doctor appointments --- where you would think the most seasoned, trained and compassionate of all people hang out. I don't think I'm going to get him a t-shirt that labels his autism. Instead, I think there's a market for a better shirt; let's try: I'm insensitive. I have no excuse."
Sunday, August 30, 2009
Jon writes about what he is looking for at this post. Please note, that while my series of late has been about dad's and creative story telling, Jon will accept stories from moms and other family members too. Here is an excerpt from Jon's post that gives an idea of the types of stories Jon is looking for:
"Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else."
Note: I've revised and submitted one of my posts from my earliest days of blogging. Bloggers and non bloggers alike are invited to submit. You can email your stories to jongilbert[put in at sign] rocketmail.com. His publication, Same Child Different Day is available for sale at his blog.
Wednesday, August 26, 2009
Recently, I spent a week with C1 (the son on the spectrum) at the fair. See Julie's post Photo Essay: Proud of Proud Equestrians! for details.
C1 won first place for the first time on Tuesday of fair week. He proudly carried his trophy with him as we left the horse riding stadium. C1 and I had discovered the 4-H food stand at the fair years ago and when we visit we always eat there. This year, we visited the fair every day. And of course, C1 insisted that we eat at the "restaurant" every day he was at the fair.
C1 carried his trophy into the 4-H stand. As we ordered our food, we caught the attention of a boy who was working for 4-H. As we sat done with our food (hot dog and fries for C1 of course), he sat down next to us.
The boy said, "Wow! That is a neat trophy. What did you get it in?"
C1 responded, "In horse riding."
The boy continued, "I entered pigs in the fair this year. I hope I win a trophy. I am finally going to by free of working here and showing my pigs. I will get to go on the midway rides soon."
I liked the boy. He was very open and friendly. I had the sense he often invited himself to tables and inserted himself into conversations. He promptly told me he was ten years old which is the same age as C1.
Storytelling runs in my family. It goes back at least to my paternal grandpa who could with a straight face tell the most outrageous stories and made his marks, his kids and grand kids, believe every word until they caught on. My dad carried on the tradition. He often made unusual claims to my brother and I when we were young and we often believed him. As we watched movies such as the Wizard of Oz, he would tell us the ending. When we asked how he knew, he would retort, "I wrote it!" Needless to say, we caught on to him fairly quickly but he still tells stories to this day.
I tell stories too. I am an academic librarian who is internationally known for teaching critical thinking skills. I have a doctorate and I am comfortable in front of audiences from my kids, my staff at the library, college students, and higher education administrators. And, I like to tell stories. My tales are usually segregated from the daily work flow (no tales at the Reference Desk to patrons!) but my boys and wife get no such mercy. They come all the time. It is up to them to figure out if it is true or not.
C2 (who is 6) was on to me early in life. He has doubted my stories for years. (How could a four year old be so skeptical?) However, the older autistic son does not tend to question my stories. That does not mean he believes them, but he hasn't challenged them.
That changed at the fair on this day. C1 called me out.
As I said, I liked the 4-H boy. As such, I gave him the courtesy of a story. I said, "I wish I could compete in the fair. I worked hard all year on my project and they wouldn't let me enter!"
The boy answered, "What did you do?"
I responded, "I raised a King Cobra snake. I love him and he is a good pet. But there is no class for him at the fair! He was even rejected for pocket pets in the open class!"
The boy was very sympathetic. He told me that that was unfair.
I continued by saying, "And that is not all. I think the fair is biased just because of one little incident last September. My King Cobra accidentally got out of the house. He ended up eating the neighbor's cat."
The boy said, "Oh! What a tough break."
However, C1 was having none of this. He stopped eating his hot dog and said, "Dad, stop telling stories. We do not have a King Cobra!"
I was stunned. C1 had never ratted me out in out in public before. My story to the boy was ruined! I had so many layers to the saga I could have elaborated on if C1 had not stopped the tale!
The boy looked at me and grinned. He said, "Well, I was not sure but..."
I guess I am doing a good job raising both an autistic and a non-autistic son. Their critical thinking skills are sharp. They can hear a tale, test their bull shit detectors, and sense if something is wrong.
C2 is telling stories already. The family tradition will continue. However, if C1 eventually tells stories, I know my life will have been a success. I think some autistic individuals can tell stories too. And their perspective will make them all the more powerful. Come on C1, I am counting on you! And my hat off to you, as you can tell people when your Dad is full of it. But please don't do it again...
Monday, August 24, 2009
Ideally the timing would have been around father's day, but this will work. I found this video while working on my previous post. This has been on You Tube since October 2007, but it is definitely worth checking out if you haven't already seen it. Just make sure you have a tissue on hand, because it inspires tears. Please stop by tomorrow for a wonderful post written by my husband about creative thinking and having a son with autism.
Thursday, August 20, 2009
Note: Justin's display about autism in the family tells a story that starts around the time his son was born--before any Suspicion arose. This work depicts the love of a mother whose affection is also apparent in more recent paintings. The child in the image, "Lobos", was diagnosed at age three.
Note: While all the artwork in "On the Outskirts of Autism" is really good, this is the one that I thought stood out as the Masterpiece. Hopefully, it will be someday be considered a classic in terms of autism-themed artwork. Justin said this painting is a personal favorite. It's definitely a favorite of mine too. Here are a few words from the artist about the moments that inspired Suspicion:
"My son was about 2 and a half when the painting was inspired. At first, as most parents, you think that your child is just being individual. This was a private home daycare. He wasn't really speaking at the time, and the worker had told us not to worry, she had seen shy children before.
As more time passed, the clues were becoming more evident. This image was basically the final straw before the first doctor's appointment was made. It is basically a snapshot of me coming to pick him up. The other children (some younger, some older) were all playing together. My son was in the corner, mesmerized by spinning the wheels of an upside down truck. He was oblivious to the other children, and my calls to him."
Justin had a gallery exhibit featuring On the Outskirts of Autism from May to June 2009 in his hometown of Winnipeg, Manitoba. Please check out the whole show on You Tube as seen below. It's definitely worth your time as the collection of artwork tells a heartfelt story of a family of four (Lobos has an older brother who is not on the autism spectrum). Two demos of Justin's songs, Sail On and Home accompany the display.
My Thoughts: I only occasionally come across the opportunity (here are one or two more examples) to write about one of my favorite topics, art and/or artists, on this blog so I was thrilled when I met a painter who has depicted autism in some of his work. As a parent of an eleven-year-old son with autism, I'm sometimes amazed at where I meet other parents of children on the autism spectrum--especially when I do not have my two children in tow. A week ago, Justin Waterman, a talented artist and musician showed up on my virtual (online) doorstep.
We met playing Lex, a Scrabble-like game, on Facebook. I hosted a game one evening, not knowing who was going to show up. (The name and photo of the opponent appears unless the player opts for a privacy setting.) I was a little surprised when someone who looks a little bit like a rock star appeared. "Who is this guy?," I thought. Thank goodness for the chat option on the game as I am, by nature, very curious. It didn't take long to figure out that we each had a son with autism and a website (please see link in above paragraph--this website also features artwork and music that are unrelated to autism).
Anyway, I'd like to wish the best of luck to Justin and his family as they sail down the river of life with autism. I'm hoping to follow up on this post by blogging about other creative dads who have children with autism spectrum disorder. The next post will probably appear Tuesday or Wednesday of next week. If you have any suggestions for posts on this topic, please email me. Thank you.
Monday, August 17, 2009
Thursday, August 13, 2009
Image: C1's friend, a fellow Pep rider who also has ASD, gets a nuzzle from Fonzi, a horse he was visiting in the horse barn. The great thing about PEP is that riders become comfortable around horses, though they also learn about horse safety too. C1's friend also did a great job competing and won some ribbons. (photo by Sherrie Sponseller)
Friday, August 7, 2009
Am a little bit behind due to a hectic summer schedule. Please bare with me. Am hoping to get back into the blogging groove soon. Here are a few of the things that I'm either working on or on my list.
1. Sending in a promised story to a fellow blogger.
2. Writing a post on said blogger's projects.
3. Writing more posts for this blog!
4. Acknowledging more fellow bloggers in posts.
5. Catching up on a couple of emails that are blog related.
6. Visiting more blogs (sorry, am going to do more of this once the school year starts).
1. Selling 50/50 raffle tickets for Central Michigan ASA's (CMASA) Golf outing on August 22.
2. Supporting chairs of August 22 event.
3. Working on website content for CMASA.
4. Helping to find a replacement for me as secretary of CMASA.
5. Keeping interested persons in the loop of what is going on with CMASA.
6. Helping to plan school year kick-off party for CMASA. Hopefully this will occur in September.
1. Getting both of my sons to accept twice weekly tutoring from an outside tutor. This has not been easy as there has been refusal to do work.
2. Keeping up with a schedule that has changed weekly.
3. Maintaining balance between the two siblings. The one with autism (C1) has had more activities (camp, horse riding, swimming lessons) scheduled for him than the one who is Neuro typical (C2)(just swimming lessons). I did paint C2's room for him to his delight, but am trying to think of something else to do for him as well.
4. Dealing with more meltdowns than usual from the one with autism due to a more unstructured schedule.
5. Keeping up with housecleaning and cooking. It's more challenging with the two home from school!
6. Taking old writing projects off the back burner.
7. Spending quality time with all of my immediate family members.
8. Monitoring old cat that has just been diagnosed with a cancer. He has a tumor in his mouth.
Saturday, August 1, 2009
Wednesday, July 29, 2009
Oh, the fun my ten-year-old son has been having. Last week we went on vacation to Traverse City, a popular destination in Northwestern Michigan. This week he is at a camp for people with special needs. I will pick him up on Friday and while I'll be glad to have him back, I'm not sure I'm looking forward to the nearly two-hour-drive home.
My husband had the relatively easier job (aside from having to wait until I faxed him prescriptions) of delivering him to camp. The elder Lorenzen guy said that our son had a grin almost all the way there. It's his fourth or fifth year at the Fowler Center, so he knew exactly what to expect. It's a week of being outside and doing activities he loves such as swimming.
So yeah. The transition from home to camp was easy enough for him to handle. The transition from camp to home? I'm holding my breath and hoping for the best. Am a little worried because he had a meltdown on his way home from Traverse City last week. He wanted to do something that was impossible on the way home, and would not let the idea go. He did calm down by the time we arrived home, but we were all on edge by the time he did. Meltdowns in the close quarters of a vehicle can be difficult.
The type of meltdown he usually has in rooted in control issues. When he can't control something such as leaving camp, he tries to control something else such as what kind of rest break we take on the way home. It can be a miserable situation for all parties. Sigh.
My husband and I have a few ideas of how to prevent an impending meltdown, though I'm not sure they will work. One idea is for me to take a recording from his dad reminding our son to "not give mom a hard time." Another is a social story or a simple verbal reminder for him to be good. Rewards are probably not a good thing to offer, because, in this case, he'll try to control what reward he'll be given.
So, I feel guilty about it, but have to admit I'm not looking forward to Friday and being alone in a van with a potentially unhappy son. On the bright side, I'm grateful he can transition to being at camp and that I don't really have to worry about getting a phone call about behavior problems, a type of call that I occasionally receive from his school.
Also, anticipating downfalls such as a meltdown helps a bit. It's better to anticipate one than to field one that comes out of nowhere. However, if you suspect I'm trying to convince myself that I'll manage things just fine on Friday, you are correct. My son and I usually get through those moments even if it's just a matter of "muddling through." It's just not easy....
Tuesday, July 7, 2009
Author's note: Here is a link for those of you interested in the efforts of librarians to make libraries more accessible for people with autism. I think it's fantastic that an effort is being made to help patrons with ASD and their families. (Thank you for the link, Joyce!)
I should spend some time at the site I mentioned in the note, though I'm not sure it will help us. I'm beginning to think getting my son to be comfortable in a library is impossible. This is ironic because my husband has been a reference librarian at one academic library or another for fifteen years and counting. You'd think a librarian's son would either like or at least love libraries.
Alas, no. My ten year old with ASD gets louder, more anxious, and generally more "silly" in a library than in most places. It's not just one library. We've been in at least three different buildings housing books and the behavior has been not so great at any of them. I'm not so sure what it is. He does have sensory issues (with a loud intercom system and an emergency blinky and beepy system that went off at an unfortunate time during one vistit at the library where his dad works). But that is the only library that is known to emit harsh sounds.
My son was almost five when his dad started work at the current institution, but he's had difficulty with his behavior since I started taking him for library visits when he was three or four years old. It doesn't seem to matter whether it is a university library or a public library with a good children's section. He can behave and will behave in most public places. Just not the library.
I was hoping that we'd sign up for the summer reading program this year, but a dismal visit this summer sort of dashed those thoughts. Oh well. I intend to keep trying to take him as he gets older. He does love to read, and maybe someday he will learn to relax in the building where all the books (and more) are. There is always hope.