A RARE RYDER SIGHTING, INDEED

A ONE in a MILLION picture of Ryder!  Look at that eye contact! It's as rare as a genuine pic of Bigfoot or the Loch Ness.

Props go to his DT, Melanie Rede for taking this while they were at the park. Thanks, Melanie!

SHOULD I FILE A FORMAL COMPLAINT LETTER?

Homeschooling is wrapping up.  I hope I can breathe then. 


We have one child not functioning right now.  It's been very difficult and very sad, but we carry on hoping for the next medication to help.  (Believe me, we've tried ALL other avenues.)  We've just received his updated testing results.  We thought we were looking at possibly childhood Bipolar, but it isn't.  Instead there really isn't a name for it; it just fits under PDD-NOS still.  Rigid thinking, inability to disengage in his thought process.  It could be a precursor to OCD.  His anxiety is through the roof, and he has dropped out of everything he once loved such as school, scouts, basketball, church.  Everything. 


 Why don't you just make him go, you ask? We've tried.  He crumbles.  He paces.  He head bangs.  He needs to feel safe.  Somewhere.  The school wanted us to call the police and MAKE him go.  HA!  How hard is it to understand that Mason is NOT doing this because he is manipulating his parents and the system?  He has never been that kind of kid.  He is innocent, I tell you!  Yes, his behavior looks as if he is trying to get out of things that cause him distress, but take a step back and really "see". What is causing this behavior that we haven't seen since he was a toddler?  He is approaching puberty, and I have heard some kids on the spectrum go through puberty early.  He is 5' 9" and weighs 185 at age 11 years old. This kid has always grown fast so I am sure hormones coupled with chemicals going haywire are contributing to these daily meltdowns.  He feels like he is going crazy when his mind gets "stuck". It is so sad to witness.  

What I have learned from all this, is that people don't really care unless it affects them personally.  The school is too worried about their numbers, or they don't get funding.  After 12 years of our kids going to this school, we experienced yet another loss when we had to pull him out of school. 

 Here is an excerpt from a complaint letter I filed:

During the 2011-2012 school year, Mason started to get headaches.  He said he couldn't concentrate in school and couldn't understand the work.  The work was getting more difficult and his anxiety level escalated.  He began missing school days.  We as parents tried many different tactics, from a 'tough love' approach to reducing stressors and we met with his school teacher who did a good job at helping him such as giving him extra time to complete homework, staying after school, etc. 

 According to teaching staff, he appeared at school to be "checked out". The staff wanted to implement a behavior plan, but we wanted to wait. There was a reason behind his so-called behavior  and we needed to get to the bottom of it. We had scheduled many doctor appointments and were waiting to get him in to see his neurologist.  It took some time. 

In the end, Mason was just not able to attend school without a battle every day.  As parents, we knew he was deeply depressed and anxious and this somehow was stemming from difficulty with comprehension due to his PDD-NOS.  His physical complaints were an outward display of the inner turmoil he was experiencing.  He struggles with expression of speech, and couldn't explain and didn't know why he was struggling so.  He just knew he was different than the other students and his previous attempts to fit in, such as using a sense of humor, were not helping anymore.  He was in a downhill spiral and had slipped through the cracks. 

As his mother, I knew eventually his peers would surpass him in development, but had hoped that we could get him through 8th grade at **** with minor issues.  To school staff, it appeared Mason had pulled the wool over his parent's eyes, and he was deliberately being difficult because he wanted to be homeschooled.  While that may appear so; one must take in account that a child with Autism has great difficulty expressing themselves and physical complaints are great indicators that we need to look further into what the problem actually is.  Children with Autism Spectrum Disorders have great difficulty LYING.   They are concrete thinkers. 

Our issues with **** is this:  Making assumptions that a child is manipulating their surroundings/parents/teachers is incorrect. Putting undue pressure on parents to "get the child to school, even if you have to call the police" is inappropriate.  If a child had a brain tumor and required homebound services, would there be such a battle over attendance? Why should it be any different if a child has mental and emotional problems?  We understand **** will not get funding without a 97% attendance average, and staff are in jeopardy of losing their jobs. What about the mental, emotional and physical health of a child?  Shouldn't that come first before they can be educated?

We as parents felt intimidated and pressured to get Mason to school.   He had missed 16 days of school by February 2012.  We had exhausted all available resources and just needed some understanding and patience.  We have been affiliated with **** since 2000, when our oldest child started kindergarten. 

Frustrated, we pulled Mason out of **** in February 2012 to homeschool him and to get him appropriate services so that he can eventually achieve success.

 It would have been helpful if the school could have offered homebound services for Mason.  I did not know such a thing existed until recently.  Now, because we pulled Mason out of school, he has lost his place at ****.  He not only lost his place physically, but emotionally and mentally as well. 

A blind child would have had more accommodations in place than a child with High Functioning Autism. 

The Center for Disease Control recently released the latest facts:  1 in 88 children in the United States are diagnosed with an autism spectrum disorder.  And these stats are 4 years old!

 

PS:

There has been another incidence where we felt intimidated by the dean, ******.  Our youngest child with severe Autism had his name drawn in their lottery for acceptance into the school.  He was six years old  at the time.  The special education teacher and ****** expressed their concerns about our son's severe condition and that, because they are a small school, they do not have the space for him if he were to be disruptive.  He would have to be taken out in the hallway to stay.  They were also concerned that they would have to hire an aide specifically for him and that they needed time to find someone.  They were not very positive, but by law, they have to adhere to the rules, and it was very obvious that they did not want a child with severe Autism to be among them.  We went home to think about it, and in the end, didn't want to cause the school to be burdened with our severely autistic son. 

 So tell me, should I sign this letter to request a formal investigation into the school?  Or should I just leave it and move on? 

I HATE causing waves.  I do not like conflict of ANY kind and I shy away from it.  I don't know what to do. 

FAMILY INTERRUPTED

Life keeps moving along.  There have been a lot of changes with us since I actually blogged on a personal note.  If I were to write everything down it would take way too long so here are some happenings in a nutshell.  Try a coconut shell. :)


1. I'm homeschooling the three oldest kids.  (Long story...)
2. I'm homeschooling.  What?!  I'm really homeschooling?  
3. I don't like it, but the alternative isn't good for our kids.  For right now.  
4. Please don't judge us.  I hate having to explain to people why.  How much time do you have?
5. Wish I had a housekeeper.
6. And a cook.
7. And a third hand and an all-seeing eye. The kids would think that was cool.
8. My brain is fried. (Insert William Shatner's voice here)  "...My....brain....is....(wait for it)...fried." 
9. Our only daughter, age 16,  was diagnosed with PDD-NOS recently. 
10.  Time for lunch.  ...Now where is that cook?


The above photo is a reminder of a time of  bliss before Autism interrupted us.  I wouldn't change it, but sometimes it really does feel like a loss.  I grieve for what could have been on that path.  Now I just don't know what to expect for their future, but I'm trying.  As hard as I can.

 Giving that special Valentine's gift doesn't always mean a big box of chocolates, expensive jewelery and heart embroidered ties.

Perhaps this year, give a gift of love through learning; at a conference offered by Future Horizons, with top experts and CEU credits! 

Input this code Spectacle and receive a 15% discount!

Feb. 3 - Des Moines - Temple Grandin, Jennifer McIlwee Myers,

              and Beth Aune (Autism/Asperger's Conference)

Feb. 17 - Sacramento - Temple Grandin, Eustacia Cuter, and 

               Beth Aune (Autism/Asperger's Conference)

Feb. 17 - Jackson, Miss. - Carol Kranowitz and Britt Collins
               (Sensory Conference)

THE PEN THIEF

Never a dull moment!  Here is a picture of Ryder who, not only once- but three times in one day-found pen ink and decided to experiment.  ...Not sure if it helps that dad is a pen hoarder.  He knows where to find them!

Teaching Contextual Sensitivity to Children on the Autism Spectrum

  Taken from the article “Autism: From Mind Blindness to Context Blindness”

By Peter Vermeulen.

Nov/Dec 2011 Autism Asperger’s Digest www.autismdigest.com

  Note:  You can get a 15% discount on a subscription to the AADigest when you use this discount code: spectrumspectacle.

Remember the scene in the movie, Rainman, where Raymond is trying to cross a street? In Raymond’s mind when the sign displays “Don’t walk,” it means only one thing: “Don’t walk.” We laugh when the sign changes from “Walk” to “Don’t walk” and Raymond stops in the middle of the intersection.  Raymond does not understand that “Don’t walk” means many different things, depending on the situation or context. When you’re halfway through the crossing, it means “hurry up” instead!

Here is another example of context blindness: When the doorbell rang, the mother of a seven-year-old boy with autism asked him to open the door. He opened the back door instead of the front. His reaction was logical, but his choice of door was out of context.

Emotion recognition training is immensely popular in the field of autism. Typical materials used in this training are photographs or pictures of facial expressions of emotions. 

Although these materials can help children with autism learn about different emotions in a rote manner, they do not reflect emotion recognition as it happens in real life.

First, we rarely see faces out of context in real life. When we try to figure out what a person feels, we look at context as much as we do facial expression: the situation, what that person says, body language, our past experiences with similar situations, etc. In fact we don’t even need a facial expression to recognize emotions. Even without a facial expression you certainly know how the man in the photo at feels, based on the context. Studies on how people process facial expressions have shown that when we look at faces, our brains always spontaneously encode the context and that in certain instances, context plays an even bigger role in emotion recognition than the facial expression.

The second problem with traditional emotion recognition training is the underlying assumption that there is a direct relationship between an emotion and its facial expression. This assumption goes back to Darwin’s idea of universal expression of emotions in which each emotion has its own distinct facial expression. Unfortunately for people with autism, facial expressions are not that straightforward and quite often are ambiguous. Take tears for instance. What do people feel when they have tears on their cheeks? It could mean sadness. But it could also mean happiness or pride. Or it could be an allergic reaction or the result of dicing an onion. How can a brain tell the difference? It uses context.

In recognizing emotions—the same is true for all mental states—the human brain relies on context. When people with autism find it hard to empathize, it is because their brain lacks contextual sensitivity. They are affected by context blindness, rather than mind blindness.

We can teach people with ASD a lot of rules and scripts, but for social understanding and competence to flourish, scripts and rules are insufficient. To effectively teach emotion recognition and social understanding to people with ASD, we must add context to the materials we teach. Even using a term such as “socially appropriate behavior” becomes misleading unless context is specified; behavior that is socially appropriate in one situation might be inappropriate in another context!

Social competence is not about knowing whether a certain behavior is socially appropriate or not, it is the knowledge of when that behavior is appropriate and when it is not.

Research has shown that more able people with ASD know quite a lot of social rules, but they have difficulty adapting these rules to changing contexts or making exceptions to the rules. Most social skill training programs focus on teaching generic social skills (e.g., how to start a conversation). However, having a conversation while waiting in the dentist’s waiting room or visiting someone at the hospital is quite different from the conversation you have hanging out with a group of buddies because the contexts are very different.

Instead of putting our focus on teaching social skills, we should focus on teaching social contexts such as visiting someone at the hospital or hanging out with friends. And then teach all the necessary rules, conversation, and behavior attached to a certain context. When you visit someone who is ill and in the hospital, what kind of present do you take? How long do you stay? What do you talk about? What should you say/not say?

The same logic about context applies to Social Stories™, a powerful tool to help people with autism navigate the social world. Instead of creating stories about certain social skills, we should build them around contexts and introduce sentences that start with if and when. In this manner a story can be adapted to different contexts. For instance, a social story about welcoming guests to your birthday party could contain the following contextual sentences:

• When the person who arrives is a close family member, you kiss them and say “hi.”
• When the person who arrives is not a close family member, you shake hands and say “hi.”

Social competence requires more than social skills; it demands contextual sensitivity— something difficult for people with ASD. Training programs designed to help people with ASD navigate the social world should therefore emphasize social contexts, not just focus on teaching social skills.

Peter Vermeulen, PhD, is a senior lecturer and consultant at Autisme Centraal in Gent, Belgium. He has written 15 books on autism, some of which have been translated into several languages.