Hi Pat,

I don't think that this quite qualifies as a question, but I wanted to suggest a possible blog post topic.

My name is Bill Rowland and I work with KenCrest Services, a non-profit human services agency that help people with developmental disabilities.

KenCrest recently introduced a series of videos to help individuals with Autism Spectrum Disorder. Designed for use with Apple’s ipod or iTouch, “Mi-Stories” are portable tutorials that help those affected by ASDs interact with the world around them. This project generated research that found on-demand lessons like these have been helpful to many that have used them.

I recently stumbled across AutismIsOK blog and I thought that you may be interested in these tutorials as a topic for a post.

If you’d like to learn more about KenCrest’s Mi-Stories, I’ve included a Press Release that describes them in more detail below and included a link to KenCrest’s Mi-Stories page: http://www.kencrest.org/autism_mi_stories.htm. Alternatively, you're welcome to contact me directly.


Thanks,

Bill

The most effective way to advocate for your child at IEP meetings is to be prepared. You must walk into the meeting knowing what you want to achieve. When I go to an IEP meeting, I take a couple of things with me:  (1) binders that hold all of my son's IEPs since kindergarten: (2) a tape recorder to record the meeting; and (3) pen and paper to take notes.

I'm told that most parents come to the meetings with nothing--just empty-handed. The more prepared you are, the more prepared the school must be. So, the first thing you need to do is get some 3-ring binders and gather up all of the paperwork you can find, every IEP, meeting notice, behavior plan, etc. Put them in order by date. Put divider tabs between the years. Get some pocket folders with 3-ring punches in them and put standardized tests in one pocket and grade cards in another. It's very intimidating to walk into a meeting with a stack of binders labeled "Your child's name; IEP; Vol. III).

Take notes at the meeting. Write down the date and time and the name of every person in the room. When you walk in, put your tape recorder in the middle of the table and turn it ON!! Yes, you absolutely have the right to make a tape recording of the meeting. There must be a representative of special education present.

Before the meeting, know what you want to accomplish. Does your child need less homework, reduced pencil and paper assignments, a classroom aide, speech therapy, OT. Know what you want and then ask for it. Be prepared to explain why the thing you want is necessary and how it will help your child succeed. If you have homework examples, test scores, reports from your doctor or therapist, take them to the IEP meeting.

Most importantly, do all of this in a spirit of cooperation. It is easy to go to these meetings and feel angry. However, if you act angry, then nothing is going to be accomplished. Remind yourself and those around the table that your child's success at school is the thing that matters the most. It is much harder for the school to say "no" when you are being polite and professional and stating your case with facts. Trust me, the school officials find it somewhat intimidating to have a prepared parent walk into the meeting. It drastically changes the school official's perception of what they can get away with telling you if they realize you are prepared. If you are angry and blame the school for everything that has happened with your child, you are going to be told "no" to everything. Please don't be in denial about your child. As his or her advocate, the best thing you can do to help your child is be honest with yourself about your child's limitations. This doesn't mean to settle for anything or nothing. Be able to explain why the relief or action you are seeking from the school will benefit your child and the school at the same time.

I've also found that walking in with a box of donuts and some coffee can get a meeting off to a really sweet start.

I am the mother of 7 year old twins one of which has aspergers/autism. He had a language delay so he has the dx of autism with aspergers tendancies, the other adhd. Alexander who has aspergers/autism is very intelligent and very high functioning, but the teachers at school insist on trying to conform him into a normal child. I have a problem with this, they want him to be able to verbally repeat directions or follow 2 and 3 step directions, he has a hard time focusing and staying on task,I told them that he has autism/aspergers it is not going to go away,and that he is not going to be able to do some of the things that a normal child can do, I don't understand why they will not focus on his strengths, instead of his weakness's.He is doing so much better in school now I thought, until I met with his speech therapist, and resource teacher. He is in the regular classroom and is pulled out during the day for speech,ot,small group work with the resource teacher. The teacher in the regular classroom is wonderful, and he does understand that his work has to be readable, and if he doesn't get to finish it he can bring it home to finish. He has an anxiety problem with completing tasks and an obsession with time and being on time.
He was with the speech therapist and he was to leave at 1:30 he was not done with the work she had given him so she made him stay past 1:30 which upset him greatly, I just don't think it is nessesary to do that, did he learn a lesson from that, no, that just ruined the rest of his day and ours when I picked him up at 2:30.That to me seems like almost torture for a child with autism, please tell me your opinion I have been searching the internet and have printed papers off on different teaching strategy's for kid's with autism, but don't seem to be making much progress with the speech therapist and resource teacher.

My name is Leigh, and I am the mother of a near 21 year old neurodiverse daughter, Amanda. I use the term neurodiverse, because she finds it a more comforting label than "Asperger's Syndrome". She is bright, funny, stubborn, brilliant, and has a wicked sense of sarcasm. She proudly wears a t-shirt that declares "High functioning- no services for me". She has a full tuition scholarship to St. Joseph's College of Maine, and they have taken her as she is, and have again and again assisted her in re-defining any pre-conceived rules she may just ignore. Her current goal is a double major in Biology and Theology, and helping the school develop a bioethics department. She's going on her second mission to Guatemala this summer. She then plans to join Mercy Corp for a 2-4 year long mission around South America to try and teach basic hygiene, husbandry, and give microloans to teach families to become self sustained. I think she's awesome.

"Yea for you" you might be thinking as you are trying to find the right gluten-free; casien-free natural chapstick substitute because your child licks his or her face from November to April leaving bright red and almost bloody dry skin. You can't look past the fact that he won't look at you and seems more interested in flapping his hands in front of his face. For most Asperger's parents, the child will come home with an assignment, engage his or her loved ones in a deep conversation about a book they are reading. Only to get a call in a day or two saying that the project on Romeo and Juliet, due today, was apparently never started.

In grade school Amanda did very well. She once described, much to her delight, that she thought in math and had to translate it into words. With luck, she had the same teacher for three of those years in a co-teaching situation. She learned, she interacted, she wrote a spontaneous Haiku in Kindergarden where the teacher wrote across in red " POETRY MUST RHYME". Our Christmas gift to this young teacher was a book on teaching multiple types of poetry to young children.

Amanda was "different" in the beginning in so many ways. We had her in speech therapy at 2 1/2 years of age because of the frustration her lisp gave her. At first she found it helpful, then she became bored. "We're doing the same things every time. I've found nothing more I can learn here (at 2 1/2 mind you). Elders took her bluntness as rudeness. She had no concept of how she could hurt other people's feelings. She'd feel bad if they actually said it, but her answer was "You LET me hurt you, I didn't set out to hurt you, but your head said this was hurtful.

We went on and on, the school's only offers were more speech therapy. Oh, and pulling her out of classes for 6 1/2 hours of "Gifted and Talented" classes weekly. She named them "Play stupid games classes while your buddies were getting the building blocks of learning they'd need in middle school. She lost it with the organization it would require. Math was her haven, it was constant, and you couldn't hurt it's feelings. She'd get very,very angry with herself for "allowing" things that others said irritate her. This was one of our breakthroughs when we could connect the frustration she was feeling with the sadness others felt when she did something similar to them.

The school testing was useless, so we had to, at considerable personal expense, have her tested. It was 10 hours of testing over 2 days into which we had to be interviewed as well. The answer, Asperger's Syndrome, was nothing we'd ever heard of. Even the testing psychiatrists had very few non-professional journal articles. I could stumble through those, but the hardest part was each study had serious limitations, control problems, relevance of statistically insignificant data. So Amanda (13 years old) went to the library, had the librarian do a literature search on books on Asperger's that were at a 10th grade reading level. Poof! Books.

The most helpful book we read was "Pretending to be normal" by Lianne Holiday Willey. We read it, and lights went on in our heads. We could enforce discipline, teach without being interrupted, and give her the feeling of normalcy that she had been denied since she started school. Soon, she asked to read the book, and we let her (179 IQ has to be good for something). She soon embodied some of the things in the book. She joined Drama club so she could learn "how normal people's faces looked" in different situations.

We had most of our trauma around report cards. A child that could discuss Jeffersonian Democracy and how it differs from the current Republic, and what the implications might have been for our country if several of his addendae had not been removed, how our country might look now. She was smart. But following the seemingly arbitrary desires of the middle school teachers and again in high school confounded her. She clung again to math, and in high school organized a geometry lunch time study group with the permission of the teacher. But we'd get 99s, 86s, and the occasional 70. Then was the year she failed junior English. My hopes for college were all but dashed.

This child, who could not convincingly lie about whether or not she had brushed her teeth, managed to fabricate a multi-layered lie about problems with computers, and a new system crash. She had her friends lie saying they'd not gotten notification of their grades, etc. It took me to the end of the summer to finally go to school and tell my story. Out came the grades, 3 98s and a 67. WAAAAYY to late for summer school. So they enrolled her in a computerized grade 11 course with a teaching assistant, and, well, she learned how to read and write by the rules. She said "These are all the rules of grammar I missed while I was playing Clue for credit" in elementary school. We took her to our PETs, who always promised life coaches, orgainization coaches, etc, but nothing ever went through.

Amanda graduated with a weighted gpa of 95.3. She always took the advanced classes because the others bored her. She got a HUGE scholarship from a small, Catholic, liberal arts college about 45 minutes from home. She had given Mercy Hospital, my place of employment, over 250 volunteer hours trying to go live with on line documentation. She created spreadsheets that not one of us could figure out how to do. She read the canned text ("Mommy, I can think of no reason to do a rectal exam on someone who has an eye injury, can you?" "No Amanda, that was meant to be Retinal, go ahead and change it". In essence, a 16 year old was making policy for the whole Catholic Health East corporation".

So, the little girl others saw as "odd", "precocious", "rude" "unthankful", "impolite", or just plain annoying has been given in just a few short years the ability to help design a major in an important, up and coming scientific field.

Yet, if you ask her what her current passion is, she will tell of the serendipitous picking up of a card off the job wall at school. It was asking for a math tutor for a 13 year old girl who lived around 20 minutes from her dorm.

I'm going to tell of their meeting from the perspective of the mother. The two met, made no eye or body contact. Amanda opened with "So...Math?" The little girl then let loose a tirade of expeltives to describe said subject, getting redder and redder. The mother expected a full blown tantrum. Amanda said "So, let's go for a walk instead" The child, still screaming, said "I have to do Math before I can Play!" Amanda stated "We're not playing, we're going to do math...just a little differently" and out they went.

After about 15 minutes outside they came back in with the little girl screaming her times tables at the top of her lungs. Amanda said only "We're inside now", the little girl grabbed her book and started to do her homework. The mother then describes what she states was a "creepy scene" in which one or the other would spit out one or two unconnected words, the other would answer in the same way, and they laughed and laughed.

After, Amanda went to speak to the mother and said, bluntly, "your daughter has Asperger's syndrome, Read these books, and I look forward to coming back Thursday. That she might not be asked back never occurred to her. She had found a kindred spirit. The mother said "We didn't get that diagnosis until yesterday, how did you know? Amanda spun around making her dress fluff out, straightened her glasses, and said "Take a good look. If you support her in the way she can learn you'll have me in 8 years. Then she giggled.

I will always remember her giggle, because it has not changed since she was little. It's a bit high pitched at times, but I can close my eyes and remember the joy of that sound as she discovered something new.

With Asperger's, especially in girls, who tend to show fewer violent reactions, services are nice. But the key is you. Remember the rules. You set them up, they follow them. If you tell them to never lie, yet you tell your girlfriend you can't go out that night because you'd promised someone to do something, the rule is now invalid and inconsistent. All caretakers have to follow the rules you set. To the letter, until the child is old enough to want to understand hand have the power to change their differences.

Wow, bizarre way to sum up a life. My daughter has taught me more about life and people than any classes, college, post grad, or just conferences in my 23 year nursing career.

These are some of my favorite teaching tips for high-functioning autistic children.  I have used many of these with my son and they have worked great.

1.  If a child throws a book on the floor, avoid asking vague questions such as "why did you do that?"  Always be as concrete as possible when communicating with these children.  Instead of the vague question, tell the child, "I don't like it when you throw your book when it is time to do your homework. Next time, just tell me that you are angry."

2.  An increase in difficult behaviors is usually an indication of added stress. Stress is often caused by a feeling of loss of control. It is helpful to give the child an opportunity to remove himself from the stressful situation by allowing him to physically leave the room until he can regain control of his emotions.

3.  Don't take misbehavior personally. Autistic children are not trying to make your life difficult. Most of their bad or unusual behavior results from them trying to survive experiences that are confusing, disorienting, or frightening. Their autism makes them egocentric and they have great difficulty in reading the reactions of others.  They don't understand social cues or sarcasm and they ascribe a literal meaning to anything that is said.

4.  Prepare the child ahead of time for changes in routine and scheduling. If the child knows in advance that he will have a substitute teacher or the school will hold an assembly when he normally has math, he can deal with the change much better. More than anything, these children crave routine and sameness. They can become very upset when things change unexpectedly.  We used to tell our son that we were going to leave the park after he went down the slide two more times.  This helped prepare him to leave, instead of just telling him abruptly that it was time to go.

5.  Don't verbally spar with your child when he has homework to do. Once you are certain that he understands the assignment, tell him that you are leaving for 10 minutes to go into another room and that when you return, you expect him to be on the third problem.  You are removing his ability to delay doing the work by simply leaving him alone with his book and paper and no one to talk to or argue with.  I've also found it helpful to clear the work area of any distractions at all that could divert his attention to the task at hand.

I'll add more tips as time goes on.  Please try some of these and let me know if you have any success.