World Cafe Blog

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Lamar Odom in addition to Boozer, as it absolutely was tough to be able to reunite, and its individual clubs, as Eto'o in addition to Ibrahimovic change safeguards, perhaps therefore to their unique growth shall be far better!

  This is my first blog post here and its a topic i've often thought about. This Topic is do we alienate ourselves by telling people we have autism and when should we tell people.  I've hosted radio shows for about 3 and half years all about autism awareness.  One of the biggest confusions I notice about autistic people when we reach adulthood is that we don't need people or are stuck up.  Truth is we all can be needy or bratty at times but the social needs still exist within an autistic mind.

  Every being desires friendship and company, but when we say we have autism are we then denying the ability to have those things?  It really depends on whether we're able to really work at friendships, social skills, and listening to each other.  Yes, I've met allot of people that you can tell have closed minds about me from the get go, its because I'm open about autism and they then think I should keep to myself or even harsher things.

 

  So then a stage emerges where sometimes I feel I can do everything possible to be social, happy, and have friends and yet zip, zilch, nata, here I am in this cruel worldbeing faced with judgements all around for wanting a basic human need.

Does even that stop me? Heck no, life is a circle, if you count your blessings you will see that the hateful people make themselves look bad and ultimately make you look good.  I'm not saying I'm friendless, I have allot of friends, past and present, but I'm also often placed in situations where it feels like everything is turning against me.  My only advice is be happy no matter what and never stop trying. 

 

  When you are comfortable enough to say you have autism is a personal choice.

It shouldn't be a rushed decision nor should it lead to discrimination and prejudice, but the world as it is you need to know sometimes its makes life harder. All I have within me is unique and gifted just in the same way you are, which is why you should never stoop to anyones level and be proud of yourself.  If you feel open about your autism thank God you are, I reached that point 5 years ago and my life couldn't be better.

My friend Simon Hammer asked my opinion:

The prison system is the largest mental health facility in the U.S. The number of special needs citizens, especially Aspergians, in the prison population is nearly 3 times their representation in the population. Are these people "badder" then the rest of us?

Absolutely not. These are our sons and daughters. Many run afoul of the law because they do not understand the implications of behavior considered to be criminal or antisocial. Perhaps we should teach them better. Others run into trouble simply because their actions are easily misconstrued by police. In addition to sensitizing our First Responders about special needs, we need to educate special needs people about how to behave in such situations. 

By definition, special needs people have special needs - medication, physical handling, intellectual and emotional consideration - that must be addressed by those entrusted with protecting the Public. Of course, during an emergency or danger safety procedures must trump civil rights. But afterwards, we must ensure that all people are treated equally as citizens.... which should not be construed to mean "the same." 

Defending special needs citizens is complicated and frustrating, requiring information dissemination, constant communication and cooperation between attorneys, parole officers, mental health and medical providers, advocates, family and the inmat himself. Now there's a new job for a Public Advocate.

Although public officials are attempting to address these issues, it will be a long time before our legal system becomes a true system of Justice. Currently some municipalities are providing sensitivity training. This form of continung education benefits both the first responder and those with special needs.  Funding is available for local governements to explore the use of mental health professionals to reduce the need for legal intervention when police are called in. Johnson County Kansas is completing a promising 2-year pilot program that has significantly reduced the number of arrests of special needs people. 

What we need in the long run is to fund a services that REDUCE the necessity for legal intervention in the first place. These services currently exist but are woefully underfunded. This is "pennywise but pound foolish" since the cost of these services is pennies on each dollar we spend on building and staffing prisons.

References:

CSG JUSTICE CENTER RELEASES "DEVELOPING A MENTAL HEALTH COURT: AN INTERDISCIPLINARY CURRICULUM"

Premise Alert Programs Help Emergency Responders and People with Disabilities and Special Need  By Bill Voit

STATEWIDE LAW ENFORCEMENT/MENTAL HEALTH EFFORTS: STRATEGIES TO SUPPORT AND SUSTAIN LOCAL INITIATIVES

Mental Health Intercept Project

HOW JOHNSON COUNTY, KANSAS, USED DATA TO PLAN AND MAP A SYSTEMWIDE RESPONSE

Intercept Project. Project Briefing. February 17, 2011. ▫ United Community Services

So I again sit to type to you, plagued by a silent subtle anxiety. This task or that always thrust to the fore front of my mind as being more important. Sometimes rightly sometimes a cruel distraction allowing the anxiety to grow somewhere hidden of the true lost priority. Independence seeming a mere dream.

 

A dull throb some where in the depths of the mechanical running of my body waiting. Whether it be a form that has gone unheeded with the statement Urgent in huge red Letters or a small message that could lead to great opportunity. It lurks down there in the dark gnawing at my intestines hanging around with the numerous telephone calls never made some of which have gone way past critical and lay decaying in a smelly heap. Its smell reeks of failure and impending doom.

 

Until a friend can say the words 'HOPE'*. Helping you to dig down, way down deep and lift them out one at a time. The coach with a strong grip as they hoist you back up into the clean smelling air and the daylight. Another task broken down with the help and support of a dear friend. Find such a friend and be there 'HOPE' as they will be yours.

 

*HOPE is a term me and my good friend and coach use to help each other. We picked it up from the fantastic book Driven to Distraction. To use as an aid to helping a friend with ADD. It loosely stands for Help (What help do you need) Obligations (What do you have to accomplish) Planning (How can you plan for that) and lastly Encouragement (Much needed when it seems that there is such a mountain still to climb).

Dr Hallowell blog can be found Here http://www.drhallowell.com/blog/

 

It is not always Easy to find that person willing to be that support or to realise that it is really what you need. And it is not always easy for someone on the spectrum to ask for this kind of help but Its always worth it in the End you grow together. I am so fortunate to have such a true friend and to get the chance to be one aswell. Go out there and become one in no matter how big or small a way.

 

Frank Louis Allen

So here it is I am attempting to blog again in the written form, not just my Images this time. I will try to provide information on our www.Autismbrainstorm.org meet ups, upcoming guests, and also the challenges face from both being on the Spectrum and being a Partially Sighted Artist. But First an Introduction is needed...

 

 

 

Well I was going to introduce myself until I was show an Article in the mail online* which I will return to, and I was a bit shocked for a second. But I'll continue because the general populations view of Autism needs to change...

 

I am a 32 year old Artist Diagnosed with both PDD/NOS and ADHD. Doctors tell me to tell people I have Aspergers because it is a much better understood term by the General Public although my Diagnosis doesn’t quite fit the Criteria. I have a eye condition called Retinitous Pigmentosa which is robbing me of cells in my retina, My genes have no means of replacing the retina cells as they die.

 

I live a fulfilled life on the whole despite these conditions yes they cause problems but problems are to be solved. I struggle with a standard job the focus and concentration needed are not always mine despite my best efforts and since my back has again herniated this is at present a Impossibility. So I work to my strengths and I am creating Independence through my Artwork. My Art work has been appreciated around the World for its unique style.

 

The author of the before mentioned Article would say from a prenatal test if one such where found that my life would not be worth living on 2 counts and this is what shocked me to my soul. She claims that we should not look to the genius model of what life with Autism could be an the reality at the hardship encountered by the family’s and the individual on the spectrum and weather or not it is worth it. She writes this article out of of Ignorance and near-sightedness with no view of autism beyond a screaming child and some distressed parents.

 

These people need to be educated, they are the people misinforming the masses, the reason families ignore and hide there autism to there own detriment and the detriment of those they love, the reason people are afraid. We need to show people not to be afraid. i just hope I can bring hope and Encouragement to counter the ignorance surrounding a lot of Peoples take of the Autistic Spectrum,

 

I also feel I must add there are no them and Us there is only Us.

 

- Frank Louis Allen

 

*The Article in question http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autistic-child-wrecks-life-.html

l.

 

My Work up in Times Square New York

 

 

It is difficult but important to keep up with all the innovations in technology for autism.  But it is equally important that we understand how to use new technology correctly.

In school, technology provided new ways for my students to understand and interact.   It enabled those students who had "given up"  new opportunity to exercise poersonal choice.  Learning to operate technology enables students to explore, experience and learn according to their own style, rate and level of sophistication. In essence, it empowers them to manage their own education

Technology also provided me as a teacher with an unexpected window into my student's thinking.  Over a three year period, I learned enough about individual preferences, learning styles, obstacles to customize my instruction in ways that better engage students.  I found that technology could capture and maintain student attention for extended periods.  And that is a big plus when working with students who are AHDH, pre-verbal, bored or frustrated.

But the value of technology does not stop at the classroom door.  This series is dedicated to exploring the many intersections of tchnology and autism.  I hope this will help readers to develop an appreciation that will help them to be better consumers.

VIDEO:   My perspective on Technology and Autism Advocacy  

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Next Pinky and I meet Stephen diFilio and Minna Levine to take a look at technology for eduation

http://livingwithautismbyjeremytolmie.blogspot.ca

I am wrighting this blog to get feed back on my posts that will be put in the book I am wrighting.

The Department of Pediatric Gastroenterology (GI) & Nutrition at MassGeneral Hospital for Children (MGHfC) is conducting A study to assess the role of a gluten free-casein free diet in the dietary management of autism associated gastrointestinal disorders. This is a study approved by the Partners IRB that may be of interest to families of children with ASD who also have GI issues and who may have interest in trying the GFCF diet, but have not yet done so. The objective of this study is to determine if this diet can be of significant benefit to individuals with ASD and GI issues.

This study may be of particular interest to those who feel they need a little extra support to get started with going GFCF. There is a dietitian on staff to teach individuals about the GFCF diet and to assist in finding GFCF food options that may help when trying to comply with the GFCF diet, but are missing their favorite gluten & casein containing foods.

This 14-week study period involves visits with a pediatric gastroenterologist who specializes in evaluating and treating individuals with ASD who also have GI issues.

Please consider participating in this study If you live in the Boston area (MA, NH, RI, etc.) and can travel to 5 study visits over a 14 week period.

CLICK HERE TO READ STUDY FLYER

My son is the artist, now 21. He has used art as his form of communication, even before he could say a word. Though he still struggles with the spoken and written word, it doesn't deter him to write stories, lyrics, and illustrate. With all his stories I created a Blog for him. http://inmyautisticworld.wordpress.com. and he is the reason for creating http://artistswithautismunite.webs.com/

When he was diagnosed at three years old, like all parents, I was overwhelmed with feelings of guilt, despair, confusion and helplessness getting ready to embark on the journey to find a cure and head it (autism) off at the pass.

I considered all the treatments being touted in the 1980's. Though did none of them because of lack of funds. We went through horrible, exasperating life changes and ever changing behaviours. He had never been on any prescription drugs. I did discover "Brain Allergies", and decided to test him for cerebral allergies causing his autistic behaviours. With the help of a physician practicing Environmental Medicine and allergiy testing, Brandon improved. Though still "in his own world", and very difficult to control and reson with, by age eleven, he ruled our house. I discovered a vitiamin, an amino acid, L-Theanine, that again was a breakthrough for our sanity and the  safety of us all.

I am greatful that I kept a diary of his life and events to record the good, the bad , the ugly...because it just keeps getting better and better. Today he is the most creative, persistant soul I have ever known. His older brothers affectionately call him "the Amazing Brandon".  He truly is, and continues to amaze us every day.

Hi

Years ago many including Dr.Temple Grandin thought that people in the spectrum dont have imagination.

The sky is just a sky to the people in the spectrum, brain researchers told us. They lack Pretend play.

They lack peer interaction. Well, Drama ( in India Drama includes music/painting/movement/design/dance and a whole lot of things) brought some major changes in the face of autism.

i would say : Drama brought parents and children together in a better bonding .

Drama brought teachers and children into one page : creative play where they could pretend and have fun.

techniques of Drama : mask brought in better eye contact( if eye contact is irritating /is it necessary that is another issue)

a Mom woked with her 14 year old son on facial mask and at the end the son said : Mom you need a hair cut.

Mom started crying and whn asked she said : first time in 14 years he has looked at me intenely.

Eyes are important for communication: where the eye goes there goes the Mind. imagine a young man facing the wall telling his beloved : I love you. what would be the impact

Imagine : a young man looking at the face of his beloved ( looking into the eyes) even he need not say I Love You. it has been said. so communication is happening with eyes.

Drama essentially trains an actor to speak with eyes. communicate with eyes. communicate with the audience at the distance with eyes. The actor communicates with fellow actors on stage by eyes.

speaking volumes of poetry through eyes: lovers on stage do that.

Why not start training our children young enough to learn and play and have fun through Drama.

 

Labels are icons, a universal shorthand enabling complicated thoughts to be communicated quickly.  When our assumptions change, so do our icons. The old ones become anachronisms... faded snapshots of simpler eras on pages from the Human Spectrum Family album. I don’t question the need to use labels. I do question the labels we need to use.

In my 26 years as a special educator, I rarely used Diagnostic labels. While they determine legal class size, they do not mandate student placement.  I find they have limited value in day-to-day planning. At my school PS177Q, a separate, self-contained school for 550 special needs students, younger autistic students are contained in homogeneous 6:1:1 ratio classes.  But older, more academic students are scattered in classrooms  mixed with Mentally Retarded, Emotionally Disturbed, and Learning Disabled.   Every school year, a teacher’s first order of business is to learn each of their students’ needs. Functional labels are preferable for planning differentiated instruction. Their use enables teachers to craft instruction for all students in an educationally mixed-bag classroom. Functional labels are intended to lead to measurable results as measured by performance standards Most special education students are exempt from taking standardized assessment.  To judge their performance, we must rely on non-standardized tools such as: report cards, IEPs, Brigance Assessments, Functional Behavior Assessments, Behavior Modification Plans, ABA assessments and daily correspondence logs with parents.

Unfortuntely, each of these tools only measure discrete student metrics. Individually, none provide a broad picture of the student. Taken together, they offer us a clinical list of descriptors unsuitable for drawing conclusions. Their inherent subjectivity dilutes their significance. Instead of documenting achievement, they focus on student limitations. Valuable when identifying remedial goals, they contribute little to our understanding of a student’s attitude, learning rate or potential for growth.  The absence of key metrics undermines the effectiveness of the work/study experience and performs a disservice to the caring businesspeople who volunteer jobs and expect the opportunities they provide will be used wisely.   

Alternate Assessment  was conceived as a means to consolidate and standardize testing as well as the process of collecting data on non-testable students. New York and other states require a portfolio of student work samples accompanied by multiple photographs documented the student as the author.  Unfortunately, this process is mechanical, tedious, and demanding.  In the past, it has been criticized as being more a measure of teacher performance following the assembly guidelines than of student achievement.  

Student portfolios could be extremely effective if we redefine the types of data we wish to collect and revise our collection methods. In 2004, New York State teachers were offered the option of submitting video evidence in lieu of photos.  I was the only teacher to do so. I was asked to present on my use of video documentation at a meeting of Special Education principals and to develop guidelines for instructing other teachers how to do the same.  In order to avoid confusion with portfolios assembled on behalf of the student, I used the term “Video Resumes”  which I believed implied that they only represented student performance.

Simply put, a Video Resume is a collection of brief recordings (60-90 seconds) of student performance under real life circumstances.  Unlike photographs, which capture performance of a single task at a specific time, video provides a dynamic accounting of a student mustering and applying multiple skills under real-life conditions.  Inadvertently, it also captures layers of valuable information not available by other means. Viewing places us in the classroom alongside the student enabling firsthand observation and reducing our need for detailed descriptions and numerical scoring results.
What can a trained observer glean from a video clip? We can observe intellectual functioning, social skills, rate and style of learning.  This provides insight into how the student applies learned skills and academics to problem-solve.  We learn how independent the student is. We see the impact of sensory issues. Because the settings are real, we can observe which distractions and stressors might be antecedents to negative behavior.  A number of schools use video to identify behavioral antecedents.  Its’ use is being studied by Ilene Schwartz at the Haring Center, University Of Washington.  Video does not lie or conceal. The use of video helps to draws attention to information often overlooked during the writing or reading of dense reports.

What can we gain from viewing multiple video clips?  A full resume helps to paint a fuller picture of the student as a person. It enables teachers to create more functional class groupings, to target appropriate texts and resources and to identify adaptations that enhance instruction.  Because resumes are maintained over time, they document the type, degree and rate of progress a student makes. A resume provides related service providers with a fuller view of the student and does so in less time than written reports. Video information is invaluable for parent-teacher conferences and for developing IEP goals.  Video resumes provides prospective employers with information that is meaningful and advises decision-making for post-graduation placement.

Video evidence is objective. It is available for review and validation. Once digitized, it is easily to update, store and share. It captures more meaningful information than pictures or work samples alone. Since it is makes review easier and quicker, video reduces professional work load and can enabling educational/remedial services to be initiated sooner.  
Resumes also provides students with important feedback.  Why would students want to participate in developing their own Video Resumes? Why would students want to self-review?  Because being videotaped and seeing one’s self on the big screen is a strong motivation for nearly everyone especially students who are always being instructed what to do and how to act. This is a wonderful opportunity for them to “strut their stuff”.  I believe that students are capable of identifying accomplishments, talents, abilities, weakness and issues of their own and their peers. Allowing students to decide what is included in their resume promotes self-reflection and engagement in the learning process. When student “on-demand” performance is lacking, we incorrectly assume that they have failed. Encouraging them to “be all that they can be”, may prove more surprising to educators than to the students themselves.

Labels aren’t perfect. Nor are they sacrosanct. When they no longer serve our purpose, we trade-up to new ones. I don’t question our need to use labels. I do question the labels we need to use.
And sometimes the best label is to use no label at all.

 

Who should pay for autism?   

I’m not referring to the emotional toll.  I’m talking about the bills.  

Someone must be responsible and they should fork over the money.   If you think the cause of Dr. Niehouse’s son’s autism is genetic, MAYBE you believe it’s the parents’ fault….. or the grandparents… or even the milkman (no insult intended to the Niehouse family but I think you get my drift).

On the other hand, if you think it’s environmental…. then MAYBE it’s the fault of the petrochemical industry… oops… scratch that…. The Niehouses are from California so it cant be the fault of car emissions…. more than likely it’s the result of noxious gases seeping up from the San Andreas Fault.  In which case its the fault of the land developers who built houses where they shouldn’t have.   No, that’s too far fetched.

OK so forget finding fault.   Let’s marinate on who should be financially responsible.   Ok . Ok… I got it.  The little Canadian children (who require milk) forced their parents to purchase milk produced by dairy  farmers …which was sold in supermarkets catering to Canadians ….who approved the Alaskan Pipe Line which transported oil to the United States …..where it was used to produce jet fuel which we know is regularly jettisoned prior to landings (safety first!) …. over California where it saturated the soil that supported the grass that fed the cows that produced the “organic” milk sold in local supermarkets  that this child consumed.  The parents even bought organic milk for their child!  They did the right thing.

So who should get stuck with the medical bills?

I did a little homework.:

• “… in the fourteenth century the Norse colony from Greenland was wiped out, and the very memory of the Norse discovery of America died. For practical purposes, the discoverer of the mainland of North America was John Cabot…”

A-ha.  Now were are getting somewhere.

• “CABOT (Caboto), JOHN (Giovanni), Italian explorer, leader of voyages of discovery from Bristol to North America in 1497 and 1498; d. 1498? Neither the place nor the date of birth of Giovanni (or Zuan) Caboto, commonly called John Cabot, is known. The earliest historical document which refers to him records his naturalization as a Venetian citizen in 1476, under a procedure by which this privilege was granted to aliens who had resided continuously in Venice for 15 years or more.”

On the basis of my research, I can now place blame squarely on the 15th century Venetians who approved John Cabots’s naturalization.

It was their fault and they naturalized him.  So why won’t the Canadian government do the same for Dr. Niehouse?

Since we are always writing about serious stuff - I thought I might lighten the mood....

While this is still about video modeling - it is fun!

Please watch!!!!  (learned from a video of greg louganis in the olympics)   I refinanced our mortage to get a pool and now Brett wants me to dig it deeper so we can put up a real diving board and a 3M diving board!

 

Hello everyone!

Thank you for being early supporters of Autism Brainstorm! Please take a few moments to help us understand what the needs and wants of our community members are by filling out this BRIEF 10 question survey. We want to have the type of content and experience that makes the time you spend with us the most beneficial.

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http://www.surveymonkey.com/s/ZMSP3VS

Targeting a child and treating them unjustly ? Some call this bullying – or is it discrimination?
Discrimination definition: the practice of unfairly treating a person or group of people differently from other people or groups of people Source: Merriam Webster
Bully: someone who frightens, hurts, or threatens smaller or weaker people
Source: Merriam Webster
Frightening, hurting or threatening weaker or smaller people are all unfair treatments -whether to a person or group of people who are different than others.
My interpretation is that they are the same….. The traditional interpretation of discrimination is treating people differently due to differences in race, ethnicity, religious beliefs, etc…. In America, the majority of this ”discrimination” has dissipated and many people consider these forms of discrimination extinct or outdated. Here in the NY area, people of all religious groups, ethnic groups, and race, are for the majority accepted without question. Recently I heard someone refer to this discrimination as “so the 60’s”.
Now in the year 2012 – discrimination is still here – but the public emphasis has shifted. Gay marriage has become a political issue. We have laws on sexual discrimination – but our children are basically ignored by the law in discrimination actions.

I know that as a child I was bullied – I was little, super skinny (wish that stayed the same), quiet, and some other qualities that were the reason behind the bullying – and just plain MEAN kids. Where do mean kids come from? Well some are just experimenting – but others – well did you ever hear the expression “the apple doesn’t fall far from the tree?”
I don’t remember too much bullying to special education children. Where was that? I remember a little but nothing like I see today.
My son has been bullied – also discriminated against. Everyone says that he is being bullied or teased. The definition of discrimination above defines discrimination as “unfair treatment of a person different from other people.”
Well – my son is different and he has been treated unfairly. He has been physically abused, the butt of a Youtube incident using words that were definitely discriminatory, excluded from teams and even treated differently and sarcastically by adults running teams. Aren’t the adults supposed to be setting an example? That’s a good one!!!! Keep the laughing to a minimum.

I guess I am writing this for multiple reasons – to bring light to this situation, to give you something to think about and hopefully to start changing some behaviors. In addition, I think airing my anger and discontent helps me to educate people.

Think back when the immigrants were first coming to the US. They were smaller and weaker and were treated horribly. Think about slavery – those people were a smaller and weaker group who were treated horribly. Think about gay people – smaller and weaker group who are fighting for equality. I could go on and on naming different groups.

Special Education children are no different – they are weaker and a smaller group – probably one of the easiest targets for mistreatment. Most of them are unable to advocate for themselves which makes their situation even worse than the other groups that are discriminated against. Unless people stand up for them and advocate, they do not have a chance….

So – again – is it bullying or discrimination – it is both!!!!!!

So – how should some of the actions be treated- as an issue of bullying or a legal issue. To the extent of the action and within reason, I think it should be treated as a legal issue –
Schools have a code of conduct – well who decides how that is interpreted? The school decides. In this case, we have to have faith in our schools and their personnel. I have faith in some of the personnel – but not all of it.
A school “Code of Conduct” being enforced by the school principal could be compared to the police having a “Code of Conduct” on the laws and behaviors of society and the police get to decide what happens to these people – not the courts. Would that be considered just? Ask my daughter – she’ll be able to quote the Constitution paragraph for you.
Reporting bullying or illegal activities is not an action the school wants to take. Why not? It may be in the papers, it will “look bad” for the school, it may be in the records, impact the public opinion of the school and therefore affect property values – so where is the incentive? There is none….
Think about it!

 

Hello All,

I’m Adnan Imleih, occupational therapist from occupied Palestine.

 After I have finished high school I was extremely lost of what I’m going to be in the coming days of my life. They suggest Occupational Therapy for me without knowing what that is. And after I got my bachelor degree and went to practice it in my environment I really touched something I couldn’t touch it in the books of Occupational Therapy.

As I always believe in the source of our energy and our ability to make a difference I do believe that in my soul, and I already know we all live within a light showing us the way when we are lost to draw ours, and with that we can make it a worth deal for all what we planned to be or to do.

What I studied in the books of occupational therapy all was like an illusion for me since I didn’t find some of it in my environment because maybe it’s not suitable to act it or hard to do it somehow. I do sometimes form shapes out of my illusion and most of the time I failed to draw anything out of it regarding my environmental basis, though I can’t deny I didn’t take a trip through it but I still believe in the facts that I made.

I’m not worrying anymore about illusion because I know now how to make it come true as long as I have the energy and the operating system guiding it with help of God.

Thank you.  

Adnan.

Welcome! I've been invited to join as a contributor to Autism Brainstorm. I thought my first blog would be a great way to introduce people to who I am, my background, and why I am here!


                                                                  The Connection Factor

                “You must be so patient” is a phrase I typically hear after telling someone that I work with children who are autistic. What many people do not understand is that the children I work with provide me with the hope that fuels my life. Those special connections inspire me and challenge me to ask the needed questions and advocate for understanding. From my earliest experiences learning about behavior and autism to learning ABA with a wide range of children to my current involvement in the community, I have realized that my work is not about patience, but about connecting with others.
                I was sure I bombed my first interview for a job teaching in an inclusion preschool specializing in autism. “What would you do if a child bit you?” was the ill-fated question. I ran the scenario through my head, but no amount of college classes prepared me for that. Apparently, logically talking about why biting is not nice was not the correct answer. Although I extensively studied behavior, volunteered with autistic teens, and babysat an autistic child, I was still terribly unaware of how much there was to learn.
                Most of my education was learning about the science behind learning and behavior. While it gave me a strong background in theoretical behavior, I wanted learn practical applications. To get more real life experience in my field I started volunteering at a local social group that paired college students with teenagers with autism. The goal was to practice social and life skills with an older peer. I was most certainly more anxious and worried during my first few meetings than any of the students I was supposed to be mentoring. What if they didn’t like me? What would we talk about? What if they didn’t talk to me? A stream of thoughts flowed through my over-exerted brain, but as soon as got to know them, their interests, and how they preferred to communicate, I finally realized they we were all just people that want to feel appreciated, supported, and to make connections with others.
                That following summer I took a position as a caretaker of a 10 year old boy with autism and his older sister. None of my classes or volunteering prepared me for 8 hour days of one on one time. Between catching him when he darted away and keeping him entertained, I was exhausted by the end of every day. By the end of summer though, we were buddies. Even though he was not very verbal, we still found our special connection while playing trains together or singing songs. After that summer I had more appreciation for the parents and families, for all the love and care they give endlessly. I still think back fondly about that summer, remembering his smile when I arrived each morning.
        All of these experiences laid a foundation for my future as a therapist and advocate. It took time and perseverance to learn how to connect in a variety of meaningful ways, and it would take even more in-depth hands-on experience to establish myself as an ABA therapist. Although I did not do so well on the behavioral questions in the interview at the preschool, my interaction with the children and willingness to learn a different way of teaching landed me a part-time job as a preschool teacher. The classroom I worked in had 18 kids, 6 of whom were autistic. The entire preschool was specifically tailored to providing an ABA-based curriculum that provided constant in-the-moment learning experiences.
    I may have gone home and cried that first week of training, but I look back and realize that the intense and meticulous training is one of the reasons I’m a strong therapist today. My first two weeks were spent with a supervisor watching my every move. It was necessary that each action and reaction were carefully calculated. After an intense ABA crash course, I was ready to be on my own.  I thrived in the fast-paced environment, providing the kids with a fun and supportive environment that provided them with constant opportunities to communicate and learn. I loved my job so much that I took it on full time. After a while I was promoted to co-coordinator, learning more about ABA programming and teaching parents how to implement similar programs in their everyday life. Most of the parents I guided were new to parenting a child with autism, may still grieving the loss of their vision for what was ahead for their child. Providing them with the skills and confidence to connect with their own child made a lasting impression in my mind.

     A move across the country prompted me to find a new job, but I knew my purpose in life was to work with children on the spectrum. There were few organizations like the one I had just left, but I stumbled across a position as an in-home ABA therapist. I instantly realized how different ABA can be, depending on the provider. In my previous position, little attention was given sensory processing disorders and relationship building. There was no time to sit and play and just connect. The importance of a balanced, tailored program was intensely clear. Additionally, working in the home with the parents and siblings enlightened me to how ABA can support family life and connections. Teaching parents how to understand their child and showing them a different way of thinking is a unique opportunity that ABA provides.  I was learning just as much from the children and their families as they were learning from me. Shadowing children in school provided me with insights to the opportunities for improvements in inclusive classroom and the dire need for educating teachers about autism and neurodiversity. The connections I made with the children, families, and teachers were the driving force behind my move into advocacy and building a supportive community.

       My first experiences branching out into advocacy seemed to be a defeating blow. My internet searches led me to blog upon blog written by adult autistics who had many negative things to say about my profession. Many of them had been mistreated, misunderstood, and felt that professionals only wanted to turn them into neurotypicals-a most offensive goal. At first, angry and hurt, I eventually put my ego aside and re-evaluated my own perspective. I joined online communities, became friends with parents and autistic adults. Soaking up these experiences in order to take a critical look at the opportunities for change in ABA therapies, but also the opportunities to educate others and advocate for the autistic community. While I still believe ABA can be a wonderful way to give children the support and connections they need, I also realize that there is room to improve it so that it reflects an understanding of neurodiversity; finding that balance between celebrating the person and supporting them in ways that will ensure they will live a rich and fulfilling life.

                My newest venture as a contributor to Human Spectrum is the next big step to advocating and educating others. It is my hope that I will be able to provide insight and prompt others to challenge their views and perspectives. I look forward to opening a dialogue that encourages others to embrace neurodiversity, celebrate differences, and make connections with others that will change the world.