Where On The Continuum?

 

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Those of you that know me personally, or have been reading my blog for some time, are aware that I am a special education teacher and an independent special education consultant. I have a myriad number of friends with children that have some type of diagnosis. I grew up with an aunt with intellectual disabilities, and have a grandson on the autism spectrum. I have an online page for parents of children that have various special needs, and am co-founder of a parent networking and support group. I tell you all these things, not to give you a list of my credentials, but to let you know, when I speak about special education, it is from years of experience. My passion and drive has always been to educate an advocate for those individuals with disabilities, and their families.

I am “back in school” to get my Master’s degree in Autism Spectrum Disorders. My classes on transition, collaboration, and behavior have validated a lot of what I have thought for years. The other day, during class discussion, we were going back and forth about the “Least Restrictive Environment (LRE)” continuum. The continuum being from very restrictive, such as individuals living in an institution, to the very least restrictive, when children (with disability diagnoses) are in their general education classes with only a minimum of supports.

I read an article the other day, written by a mother of two children. One diagnosed with Down Syndrome and one not. The article discussed how she wanted her child with DS to have full inclusion. The author believes, in her opinion, that all children, regardless of (dis)ability, should have a fully inclusive experience at school.

Her article made me wonder. Do all parents feel this way? Is full inclusion really the best education, regardless of diagnosis, for all children? Is being with “typical” peers, using the same general curriculum, always the most appropriate learning for all involved? I took this topic to my online page for parents. Those that replied to the discussion, had some interesting perspectives. Parents told of their children, that are in full inclusion, getting in trouble frequently, and often requiring, but not receiving, more sensory breaks. Others talked about a mixture of “pull out” special ed classes and general ed, while others wanted their children out of the general ed classroom altogether, because their child was being bullied. This parent spoke, of feeling her child was safer in a special education classroom. I believe all these parents wished full inclusion would work, but unfortunately that often isn’t the reality. Maybe some of my readers  have children in full inclusion and it is working. I’d love to hear your stories.

Special education has come a long way since the enactment of Public Law 94-142, The Education of All Handicapped Children Act, forty-one years ago. Reauthorizations of the Individuals with Disabilities Education Act, over the last twenty-six years have created more opportunities for those students with disabilities, and their families. Before 1975, special education services were hit and miss. Some students, who desperately needed services, didn’t get anything at all. Even with all the good that has occurred since this time, there is still a long way to go……….

I am a firm believer in everyone having a voice. I believe in real collaboration, working together to form solutions that will be good for all involved. Do I expect perfection? Absolutely not. I doubt anything will ever be perfect……but, it can be better. Here are some questions I think about, not because I have all the answers, but because I think we need to think about these issues and consider the implications. In this way we (the families, student, schools) can make the best choices possible. Isn’t that what special education should be about?

  1. Is full inclusion always appropriate if a child is unable to work at their grade level? Should we alter the integrity of grade level curriculum in that classroom? Or are modifications always okay? How many accommodations/supports are too many to still be considered for full inclusion?
  2. Is having a special education teacher in the general education classroom for one or two academics, enough?  Does working with the special ed teacher, in the general ed classroom, make the child feel even more different? Is working one on one or in smaller groups in a special ed. classroom, wrong?
  3. What about all the non-academic activities? Some students have difficulty during unstructured times. Some students require more sensory breaks. Some students require a person to teach them and daily practice with them, social skills.
  4. Is is right to expect a general education teacher (who might have only had to take one or two special ed. classes to get their degree) to understand a myriad number of disabilities their students could have? Can we expect them to be proactive instead of reactive in their classroom behavior management? Is it fair and equitable to treat all the children the same? Does fair always mean equal?
  5. How do we keep students from being unkind to each other? Do we talk about a student’s disability to the class? In order to help the class understand “why” a student might act the way he/she does?
  6. Should the student who has a severe intellectual disability, be subjected to taking standardized tests at their grade level? (For example, should a fourteen year old with the cognitive ability of a toddler be expected to take an eighth grade test? And if so, why? How will the results even be close to any kind of accuracy?)
  7. Should a teenager with high functioning autism have less supports in his general ed classes, because he “doesn’t look like he has autism” and “we don’t want him labeled”?
  8. Is overlooking a student’s true needs, an inherent danger in inclusion, because sometimes a student doesn’t “look” like he/she needs special ed services/supports? (whatever that is supposed to mean)
  9. If/When do the rights of a child with special needs carry more weight, than a child who does not have special needs?
  10. Are we making decisions now that will ultimately benefit the student after he/she graduates? Shouldn’t all of school be preparation for life after graduation? Especially, with teenagers, how to we make sure our children will have a smooth transition?

Blog readers, what do you think? I would be interested to hear your opinions, your experiences……

 

 

Autism Awareness-A Call To Action!

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As some of you know, that have been reading my blog for awhile, I am a special education teacher. I am also a consultant and advocate. It has been both an interesting and rewarding choice for my life’s work. A choice that I have never regretted. At times, it has been fascinating and encouraging, and other times frustrating and overwhelming….much like life itself. There are good days and well, the not so good days.

April is autism awareness month. Those of us who are immersed in the world of autism understand that awareness is not just one month out of the year, but an every day call to action. As time goes on, more and more people are being made aware of autism because they are personally being touched by it. They have a loved one with an autism spectrum diagnosis, or a friend’s child, or a classmate or the family that sits behind you in the pew at church. Even though the CDC just announced that so far this year the numbers of autism diagnoses are stable, but up to this point, the number of autism diagnoses has accelerated over the the past 25-30 years. In the late 1980’s autism was known about, but considered fairly rare. My college professors said that I, as a special education teacher, would probably have more students with Down Syndrome or intellectual disabilities or learning disabilities than a child with autism. At that time autism was about 1 in every 10,000 births. By 2000 it was 1:150. Then it was 1:88. Now it is 1:68.

The people in this epic battle with autism, don’t always agree on what causes autism. They might not agree on what are the best therapies. Whether or not a strict diet will help ease the physical pain that often accompanies those with autism. Individuals with high functioning autism have their own issues with which to contend. “Oh, he doesn’t look autistic. I think he will outgrow it. Just give him time.” (As if, there is a specific autism “look” and “giving him time” only delays the intervention that is desperately needed.) Sometimes supports are overlooked because he seems “so normal” accept for his quirkiness. It is a struggle.

The journey with autism is real for a lot of parents. All these children that have been diagnosed over the past quarter century are growing up. What do families do when their child with autism grows up? The supports for adults with autism are sorely lacking. As these children grow up and age out of the school system, there will be a tsunami of autism in the adult world, like nothing we’ve ever seen before. We, as a society, cannot abandon these individuals or their families. Burying our heads in the sand, will do nothing to solve the problem.

This is a call to action. Not just to wear a special color on a special day, but to stand up and advocate every day. To make a difference in the lives of these individuals……

Autism Stats:

*Prevalence of ASD is estimated at 1:68 births (CDC,2014)

*It is five times more prevalent in boys than in girls.

*There is no known cause or cure.

*No two persons with Autism Spectrum Disorder (ASD) are alike.

*Early intervention (EI) is key! Outcomes improve when diagnosis and intervention occur early.

(stats from: OCALI- Ohio Center for Autism and Low Incidence)

A previous, older post of mine,on autism….notice the difference in the stats from the mid 2000’s to now.

https://gibsongirl247.wordpress.com/2013/04/02/autism-is-not-a-dirty-word-2/

 

 

You Might Be The One To Make A Difference

 

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I read something not long ago about the church. This particular article focused on families that have children with disabilities. Being a special education teacher, and a vocal advocate for those with disabilities, these kinds of articles always catch my attention.

I have heard over and over again from parents who have children on the autism spectrum, about how they want to go to church. They want to worship with fellow believers. They love singing both praise music as well as old, familiar hymns. They want to quiet their souls so they can hear a word from God. The thing is, they don’t always feel welcomed when they cross over the threshold of the church building.

Oh, it is not always the words that say, “You’re not welcome”. Sometimes it is the stares. Sometimes it shows itself as impatience with or fear of someone who looks or acts differently. Sometimes it isn’t intentional. Sometimes people just don’t know what to do, how to act, or what to say…..so they don’t do anything.

And with that, the door slams shut on a vast mission field.

Autism. Intellectual Disability. Learning Differences. Anxiety or Depression. Emotional Issues. A different physical appearance. ADD/ADHD. Health Impaired. Chronic medical issues. Sometimes the disability is obvious, but often times it is not………..until it is.

As followers of Christ, He calls us to love our neighbors…whether they are literally next door, down the street, on the job, at school…..or at church on Sunday morning.

“‘Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’The second is this: ‘Love your neighbor as yourself.’There is no commandment greater than these.” Mark 12:30-31

This Sunday open your eyes and look around your church. See people.

You never know……you might be the one to make a difference in someone’s life.

The world is desperate for those who are willing step out of their comfort zones.

The Ups And Downs

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Today is Central Auditory Processing Disorder awareness day. April is Autism awareness month. As a special education teacher, consultant and advocate I have had the pleasure (and sometimes frustration) of working with students with all sorts of diagnoses. I have learned a lot from my students, and their parents, over the years…..things I would never have learned had I not been on this journey.

This is a post from my archives, I am reblogging in support of those with auditory processing disorders and autism.

Making A Real Difference

My friend was sitting at my kitchen counter yesterday morning. She hangs out while I work with her son during Fun Kitchen Fridays. He is learning life skills as we create a cookbook for independent living.  My friend told me that a jeep had just pulled up in my snow covered driveway. Dogs began barking as I opened the door. Flowers for me? Completely unexpected, but welcomed. The flowers were beautiful and smelled like spring on a cold winter day. The card attached read: Thank you for helping my Mom change my life. Love, K.D

The message was short. Simple. Sweet.

Yet, to me, deeply profound. I had what my son likes to refer to as “moist eyes”, as I read the card.

Over the past several weeks I have been consulting with K’s mom. K is on the autism spectrum and she needed help with school planning. Planning that would teach her, and challenge her, and benefit her….things that would make a real difference in the life of this young child.

For parents of children with special needs, many times the battles are great. Being an advocate is not easy work. There are set backs and disappointments, so when the battle is finally won the rewards are often bitter sweet.

Sometimes when life gets us down and everything seems to be going wrong, a small, simple gesture can mean so much.

Making a real, positive, difference in a person’s life. One day at a time.

“They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’

 “He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’

Matthew 25: 44-45  NIV

Striving For More

Disability is defined as a physical or mental condition that limits a person’s movements, senses, or activities.         IMG_1297

It is considered a handicap or an impairment. Not typical.
Sometimes a person’s disability can be seen…and at other times it cannot.
There are challenges for those having a disability. Accepting ones limitations without accepting defeat. Living life without living less.
On the other hand, one can be perfectly healthy both physically and cognitively, but live a far greater disability, shown by ignorance.
No one should have to live in a box, only longing to be free.
Able bodied doesn’t mean ability, anymore than disabled body mean dis-ability.
People are so much more, and have so much to offer when given the opportunity.
And shouldn’t we all strive to see the person inside? See the whole, instead of the parts?
Yesterday, I went to a conference sponsored by Joni and Friends. As one who has worked in the special needs community for most of my life, I am no stranger to working with individuals that face challenges on a daily basis. I was mesmerized and energized by the speakers at this event, making a difference in their communities in real and tangible ways.
Striving for more.
The world is always better when we stop to help each other.

 

 

 

Incredibly Unique

If you have met one person with autism, then you’ve met ….them all  one person with autism. Anyone who works with, knows, or loves someone with autism, understands that this is true. Just as we are each unique in our own right, the same goes for those on the autism spectrum. Individuals with autism share some basic characteristics, but other than that they are incredibly unique.

April is Autism Awareness month. As someone who has spent many years working with and loving those with autism, I wanted to share some of my posts from years past. It is interesting looking back and reading these posts because so much has changed in a matter of a few short years. What used to be a statistic of 1 in 150 children being on the autism spectrum, is now I think at last check, 1 in 68. (Some even say 1:50) Research needs to continue to uncover the cause of this widespread epidemic. When I was in college in the late 80’s, studying for my special education major, I don’t remember autism even being discussed. If it was, it was not in much detail. Now, twenty-five years later, everyone has heard of autism. What has changed in that short amount of time?

You can read some of my previous posts on autism, here. You can also read here and here.

 

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Making A Real Difference

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My friend was sitting at my kitchen counter yesterday morning. She hangs out while I work with her son during Fun Kitchen Fridays. He is learning life skills as we create a cookbook for independent living.  My friend told me that a jeep had just pulled up in my snow covered driveway. Dogs began barking as I opened the door. Flowers for me? Completely unexpected, but welcomed. The flowers were beautiful and smelled like spring on a cold winter day. The card attached read: Thank you for helping my Mom change my life. Love, K.D

The message was short. Simple. Sweet.

Yet, to me, deeply profound. I had what my son likes to refer to as “moist eyes”, as I read the card.

Over the past several weeks I have been consulting with K’s mom. K is on the autism spectrum and she needed help with school planning. Planning that would teach her, and challenge her, and benefit her….things that would make a real difference in the life of this young child.

For parents of children with special needs, many times the battles are great. Being an advocate is not easy work. There are set backs and disappointments, so when the battle is finally won the rewards are often bitter sweet.

Sometimes when life gets us down and everything seems to be going wrong, a small, simple gesture can mean so much.

Making a real, positive, difference in a person’s life. One day at a time.

“They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’

 “He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’

Matthew 25: 44-45  NIV

Stakeholder Responsibilities

At Gibson Academy, we believe each stakeholder plays a vital role in helping all our students reach their full potential.

 

Parents/Family Members:

  • Participate in all meetings about their child’s education
  • Be trained in the proper use of the communication system your child will be using
  • Use the same communication systems and interventions at home to allow for consistency across environments

 

School Administrators:

  • Have a working understanding of the Individuals with Disabilities Education Improvement Act
  • Know what plans are being used with students in the school, assist with implementation as necessary
  • Attend all IEP meetings

 

Special Education Teachers

  • Understand Individuals with Disabilities Education Improvement Act
  • Be responsible for implementation and compliance of child’s Individual Education Plan
  • Work with Speech and Language Pathologist, Occupational/Physical Therapists, Behavior Interventionist, Autism Specialist and any other school staff to insure student’s program is being met under both state and federal law
  • Maintain open communication with parents about their child’s progress

 

General Education Teachers

  • Read and have a working understanding of student’s IEP, including accomodations/modifications to be used in classroom, communication system, reinforcers, and consequences of behaviors.
  • Implement any accomodations/modifications in classroom per IEP
  • Consistently use current communication system for student
  • Collaborate with special education staff

 

Paraprofessionals

  • Assist both special education and general education teachers in implementing IEP’s
  • Be trained in proper use of communication systems, reinforcment, and consequences for behaviors
  • Have at least a basic knowledge of Autism Spectrum Disorders

 

Speech and Language Pathologists

  • Be responsible for speech and language services for students
  • Ensure compliance with hours and services listed on the IEP
  • Works with both special education and general education teachers to implement speech and language goals on the IEP
  • Assists those that work with the student, in correctly using the communication system

 

Occupational Therapists

  • Be responsible for implementing occupational goals as stated in the IEP
  • Assist in obtaining materials that can be used in the classroom setting to further occupational goals
  • Assist in obtaining materials and objects that can be used for sensory activities

 

Behavior Intervention Specialist

  • Participate in IEP/FBA/BIP team meetings as needed
  • Assist in any necessary planning to improve student’s behavior
  • Assist school staff with implementation of Behavior Intervention Plans

 

Autism Specialist

  • Assist school in screening for students with Autism Spectrum Disorders
  • Participate in IEP meetings
  • Assist staff in understanding ASD and help provide interventions and strategies that allow for student’s success

Characteristics of Potential Candidates

Glennen, S.L., (1996). Handbook of Augmentative and Alternative Communication. pp.59-69. Singular.

Chapter three in this book discusses both augmentative and alternative forms of communication, and the various people that might find these types of communication beneficial.

Hanline, M.F., Nunes, D., Worthy, M.B., (2007). Augmentative and Alternative Communication in The Early Childhood Years. National Association for the Education of Young Children. website: http://www.naeyc.org/files/yc/file/200707/BTJHanline.pdf

This was an informative article. The article talks about various AAC devices, developing AAC systems for students. and integrating them into the classroom setting.

McAfoose, L.R., DynaVox Systems LLC., (2004). Using AAC Device Features to Enhance Teenager’s Quality of Life. Assistive Technology Outcomes and Benefits, 1, 33-41.

This was an interesting article on the use of AAC devices with a 17 year old girl. The article talked about the device she used to communicate, and how it is important to be able to use devices, not only at school, but at home.

Smith J., (2012, March 15).Using Augmentative and Alternative Communication (AAC) Devices. Speech Buddies Blog. website:http://www.speechbuddy.com/blog/speech-therapy-techniques/using-augmentative-and-alternative-communication-aac-devices/

The author discusses some of the various AAC devices available, and how to select the right device. She mentions that using an AAC device does not mean one is “giving up” on speech. The devices complement speech/language therapy.

Eric’s Augmentative and Alternative Communication

Eric Jones is my fictitious, eight year old, student that has autism. I created a profile based on a compilation of characteristics that I have observed in children on the spectrum. I will be referring to his profile throughout this blog post. When Eric’s parents enrolled him at Gibson Academy, they informed the staff that Eric was diagnosed at age four, with autism. He had a vocabulary of only a few words. His time at his previous school was spent between a self contained classroom and inclusion. His kindergarten and first grade years were chaotic and challenging. According to his parents it caused a great deal of stress and agitation for their son. They are hoping for a different outcome this school year, and want only the best for their son.

Eric Jones was given the Autism Diagnostic Interview-R along with the Autism Diagnostic Observation Schedule. (Lord, Rutter, DiLavore, & Risi, 2001) Conducting these interviews and observations allowed us to have an accurate understanding of Eric’s strengths and weaknesses in communication. They also allowed for a clearer picture of what Eric will be able to accomplish. Following this, we were able to create a comprehensive communication profile that will assist us in meeting Eric’s educational and vocational needs. The staff also completed informal observations of Eric, have spoken numerous times with his parents to better understand their perspective and what things they would like to see Eric achieve, his parents also allowed us to look at school records from their son’s previous school, as well as contacted Eric’s medical physician that has followed Eric since infancy.

Eric will require instructional strategies to foster his functional communication. We would like to see him be able to communicate in “real life” situations across all environments. That is the goal. The school staff, therapists and family will all need to work together to insure Eric’s success. We will help Eric to have a consistent routine each school day. He will be expected to use a schedule in each classroom and at home that will also help with his task organization. In the beginning a short schedule of two tasks at a time will be used. If Eric completes these two tasks he will be given a reinforcer. Since Eric enjoys numbers, we might consider a reinforcer that could somehow incorporate his love of numbers. We might consider time on the calculator, or math games on the computer. A visual timer will be used during the reinforcement time. Tasks will be increased in increments as Eric makes progress in using a schedule consistently. Consistent routines and schedules, predictability in his classes throughout the day, and consistent consequences will allow Eric the stability and structure that he needs. He will begin working on attending during class, learning cause and effect (might use an If-Then card to accomplish this), and relating to others (saying hello, I’m finished, or I need help). Eric’s teachers will be called on to make certain necessary modifications or adaptations in order for Eric to be successful in their classrooms. After a time, when Eric has mastered these objectives, he may not require as many adaptations. We will be calling on our speech and language pathologist to spend some of her sessions with Eric, working on his functional communication and pragmatics in his homeroom class. She will have Eric practicing his language and social skills with his general education peer group. This is very important, as peer interactions will be stressed in Eric’s plan. The occupational therapist will obtain fidgets for Eric to use throughout his day at school. We feel that these will help to relieve stress that Eric might feel in his classes. He will also be taught some self-awareness skills. When he starts to feel anxious, he can use some of the destressing techniques that he will be taught. (counting aloud, since this is a favorite thing to do, using a pack of number cards to flip etc.) It is expected that teachers will allow Eric to have sensory breaks or “time away” as needed. This preventative measure will allow Eric the opportunity to calm down, without having tantruming or out of control melt downs.

We might consider using a Picture Exchange Communication System (PECS) (Bondy & Frost, 2001, 2009) with Eric, considering he is a visual learner, and has a limited verbal vocabulary. The pictures would be images of real objects. A portable electronic communication board, such as Go Talk, or Picture Card may also be an option for Eric. All of his classrooms would use labels and pictorial directions as often as possible in order to aide in learning. A picture schedule/calendar will be posted in Eric’s homeroom class, where he starts his day. This will give him a visual of what to expect during his school day, such as different special area classes like music, art, library or physical education. A minature version of this schedule would be on his clipboard. This would also be used to make him more aware of assemblies, or upcoming field trips etc. Undoubtedly, there will be some challenges that we will face, as is normally the case any time something new is attempted. Teachers will have to be reminded to be consistent with the daily schedules, and Eric will need to be prompted to use his schedule, and to take his communication system with him throughout the day. He will also need to be assisted, at least in the beginning, with making choices. We can help Eric with this by giving him more “real life” choices throughout his school day. Using incentives to help him make choices is a possibility. Since Eric tends to fidget with his fingers, or eyelashes, we might help Eric use more socially appropriate figits like a stress ball or putty as an incentive, these objects could help relieve his stress and feelings of anxiousness. The end goal is for Eric to “own” his communication, so it is important that he buys into whichever system he ends up using. We will work together to get through each of the challenges. We want to see Eric successful in his second grade classroom.

After six weeks of school the team will meet together to evaluate how Eric is progressing at Gibson Academy. Classroom teachers, paraprofessionals, therapists, and the principal will attend the meeting. Eric’s parents will be asked to attend the meeting also, as they will be able to give valuable insight into whether or not Eric is carrying over the communication skills he is learning, into his home environment. The group will discuss the positives that are happening with Eric’s communication plan, as well as any challenges. All involved, will be asked to brainstorm solutions to known challenges, in order for things to run more smoothly. Everyone is encouraged to think outside of the box. Questions to consider: Is Eric using his communication system consistently? Is he using it in all of his classes? Are there some classes he is having a harder time with than others? Why? What can be done to help him be successful? How is he doing with transitions through out the day? Is he requiring the same amount of prompts/reinforcers as he did in the beginning? Is Eric any more verbal? Is he initiating communication more often? Is he actively participating in more interactions with his peers?

Our hope is that Eric, over time, will be more involved in his classes, instigate more conversations, have more interactions with his peers and the adults in his life, and ultimately have an overall sense of purpose in his communication.

 

Bondy, A.S., & Frost, L.A. (2001). A picture’s worth: PECS and other visual communication strategies in autism. Bethesda, MD: Woodbine.

Lord, C., Rutter, M.A., DiLavore, P.C., & Risi, S. (2001). The Autism Diagnostic Observation Schedule. Los Angles, CA: Western Psychological Services.