Does the Creating and Implementing Visual Supports Feel Overwhelming?

Hi Amanda, 

You asked me a question several weeks ago in class…do I feel overwhelmed with all the visual supports and communication interventions? In retrospect, I feel you are entitled to a more thorough response. I used to feel overwhelmed, and sometimes I still feel overwhelmed

I have learned to prioritize in very small increments, by isolating the essential pieces and then building into the existing system or creating new visual supports slowly. When I was working in the capacity of the classroom teacher the staff and I integrated and used visual communication intervention throughout all contexts of the day, consistently. Communication supports were physically accessible in the areas where activities occured… a natural component of our experiences together as a learning community.

Also, I learned over time to focus energy on developing visual strategies for one target goal at a time,  implementation towards the target goal, and for one student at a time and then to systemically move forward. It requires choreography on a time continuum.

Sometimes I feel overwhelmed when I need to produce in behalf of students that I do not provide direct service to …then I must rely on the performance of the staff to inplement the practice. I become frustrated when I do not have adequate time to create visual supports for the direct service I provide. My favorite teachers are the ones who are genuinely engaged with students with ASD and implement interventions consistently.

I really feel overwhelmed when I look in my car, my garage, my closets and attic, and see tubs of visual tools! I have been servicing a very large district, in and out of buildings and classrooms, for a very long time! LOL I like being focused on one person or one group in a very direct and effective manner, then everyone wins! I also like data that demonstrates results!

Respectfully,

Mary

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What Does it feel Like to Hear a Diagnosis of ASD for the First Time?

Diagnosis – What does it feel like to hear a diagnosis of ASD for the very first time?

I cannot say for sure I can only speculate that a parent hearing the diagnosis of an ASD for the first time might be or experience a great sense of loss and grief. I can imagine for many it is like the death of a dream. Hard to say and perhaps a truth.

I imagine that like any parent we anticipate the birth of a healthy child without complications, or physical and mental anomalies. Anything less than our idea of perfect might be devastating. As parents we look for the typical milestones of development. We watch for the development of positive social interactions and social-emotional growth.

The first stage of grief is “denial” a very common reaction to loss. When thinking about loss I can only say from my experiences that it is a challenge of strength and spirit and requires great patience, self knowledge, and honesty.

Loss changes how we move forward in the future, how we base decisions for the best interests of the child, the family, and ourselves. How do we begin to cope and hope?

My readings and teachings tell me that a diagnosis of ASD can be and feel devastating. Many parents go into a state of denial and stay there for great lengths of time. What becomes internalized there I wonder? Self blame, guilt, doubt, imperfection? Who was living in a perfect world anyway?

Having a child with an ASD is a gift. It is a gift given to humanity to teach us to see, perceive, to live life more deliberately, with purpose and intent. It is a call for us to give of ourselves, our time.

A child with ASD will have challenges to overcome, will have more learning to do than a typical child, will achieve those milestones – maybe at a slower pace but achieve them anyway. Early intervention and intensive therapies and guidance can support the child with autism in maximizing the potential to live free and socially independent. 

I can only empathize with the new parent who has to struggle with the first time “label” of autism , ASD, Aspergers syndrome. I cannot get inside their head, or their heart, but I do know…children are our most precious treasures on earth, and as much sadness from loss might initially surround us it is imperative to hold heart and move forward to pro-active behavior in educating ourselves, our children, and the community in the nurturing of the child.

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Are you locked into “Social Expectations” when you are in public with you child?

Do you own a suitcase filled with the “Shoulds”when it comes to being in public with your child with an Autism Spectrum Disorder?

The shoulds are a large external family of social dictators that tend to rule internal social expectations. The should family is usually comprised of the social perspectives of others. The should family has influenced our sociocultural behavior since we were young children and depending on how and who we have become as adults the “shoulds” still seem to regulate our behaviors from a deep internal fortress.

You should not take your child out in public, you should feel embarrassed when he has a meltdown, you should not cry in public, you should not express your feelings to total strangers, you should wear an orange hat with a purple fishing vest and carry a large banana to call home to mother! Should you? Should you be listening to the ancient and current dictators of  “should” telling you who and how to be and when to do it? Should you? I challenge you!

Who determines your response to a new and different set of behaviors from your child? Who prepared you to accept and love a child that is so different and unusual than anything you have ever experienced? Who prepared you for the child that does not seem to blend into any setting you live work and play in?

Who – most likely no-one. But it is okay. You are with the most unique and special gift you have been given in life. Your child is amazing!

Why let others and internal guardians of the “should” fortress indoctrinate you and tell you how to think feel and act? I am not telling you what or how you should do things. I am inviting you to take a personal uncomfortable risk, take a challenge to do and think and feel differently, invite a new internal voice that asks “how can I do, and see differently”, what do I need, what does my child need and how can we achieve it together.

I invite you to develop a new system that challenges, educates, the existing belief system of the social dictates of the “shoulds”.  Educate yourself, your family, your immediate community on the very unique needs and best practices of and for your child.

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Curses foiled again! What is the cursing all about?

Carla curses and cusses using long rap like repetitive sentences. The volume of her voice becomes louder as the seconds tick on. When we ask her to stop or tell her to be quiet she cries and grumbles and keeps on talking in a long string of indistinguishable words with a few curse words thrown in. Sometimes we can make out the lines from a violent movie.

Carla is exhibiting delayed echolalia, the repetition of words an echo like behavior. There can be many reasons why she does this: 1) it may be auditory responsivity,a sensory sensitivity, an attempt to control undesired auditory input into her processing system 2) she may like to see the change in facial expressions as people respond to her 3) she may be protesting a demand being placed on her like a request to complete her work she may or may not like or understand 4) she may want your attention  5) she may really enjoy th rythym of the words as the come out of her mouth. 6) It may be deferred or latent echolalic behavior.

Several questions I ask myself: Does Carla understand the content she is talking about? What is she getting from the behavior? How am I responding to it – Am I inadvertently  encouraging or reinforcing the behavior through my response to it?  Because, I am not Carla, I cannot get inside her mind to experience what she is experiencing. You as the parent, caregiver, or primary staff may know Carla’s behaviors and preferences very well and may be able to form a hypothesis or conclusions through observations.

Pull out the ABC chart (insert link). When is the behavior occurring, how long does it last, what does the behavior look like, what is the consequence and in speaking of consequence I am referring to your immediate response to Carla’s behavior, not a punitive action, and what comes next.

Some suggestions for developing a replacement behavior. Ignoring the cursive talk will decrease the amount of emphasis placed on the use of the words themselves –in other words decrease the attention to the undesired stimulus and increase the attention to desired stimulus – develop and direct Carlas attention using cues that can change her behavior. Decide “good” words you would like her to say using the same cadence she uses when she says bad words. Provide immediate positive reinforcement when she uses one good word, and gradually build up to two words, three words, and so on.  The reinforcement may need to be something tangible depending on “what” may be motivating for Carla. 

Finding immediate solutions is often difficult. The behavior described requires a new “teaching piece be put in place”. In developing the teaching piece it is important to look at the aforementioned considerations…what is driving the behavior and what is the child getting from it.  Remember it takes a 10000 repitions to learn something new… don’t give up on one attempt! More later!

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What Resources Are Available for Minority Children With Autism

What resources are available for minority children with autism?

Services vary from State to State. Federal guidelines state that all children are entitled to a Free and Appropriate Public Education.

When the child reaches the age to enter school this is an area where, based on an educational diagnosis, parents who understand their parental rights can find basic services such as speech and language, social work, occupational therapy and placement in a categorical classroom with highly qualified staff knowledgeable in best practices and interventions for people with an Autism Spectrum Disorder.

Special Education is not a place…it is a service for the younger child, prior to the age for school entry,  most parents and guardians should be able to obtain help from the State Government to develop an Individualized Family Service Plan an IFSP. This would include medical evaluation and services.

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How to Use Scripts for Children With Autism

How to use scripts with children with autism is contingent on a several factors.

The first being consideration of the child’s cognitive abilities, particularly reading with comprehension.  Many children with autism are “word” callers…they can read very advanced text but do not have the comprehension to go with it.

The second, will the scripting be taught across all contexts of the child’s life – generalized, e.g. home, school, church, other community events.

Third, scripting requires the support of two or more adults initially to help pair the script at the appropriate breaks in conversation.

Fourth, will the scripting take into account unplanned commenting or questioning by others.

Fifth, will the child use the script to fill in information within situations he or she does not understand. Sixth, will the person using the script be able to interpret or comprehend the subtle nuances of facial expressions, body language and vocal tones of the person he or she is interacting with. Finally, the script must have a way to indicate when not to talk and when to talk without the person reading the  silent components out loud.

I will share a story, Johnathan, a young person with considered “high functioning” autism. He had been taught to respond to situations of dissapointment with the phrase, “It is okay sometimes things happen that I do not feel happy about”.

We had been working on building clay pots. When fired in the kiln, his pottery exploded into a zillion pieces.  I saved the pieces to talk with him about what happened.  He said “It is okay, sometimes things happen that I do not feel happy about.”  wow! I thought that was really accepting. The following week I learned that he had gone home and literally had a major meltdown that involved agressive behavior, kicking cupboards, punching walls, throwing dishes, and literally destroyong his mother’s home. His emotions and the phrase were not a match. He demonstrated delayed and unregulated expression of dissapointment.

Scripting can be a good tool …however caution must be used. We cannot predict all of the encounters the person with autism might have … scripting can be a reliable tool if the person is provided with a personalized reference guide about when to use what script.

Jozua another young man with limited speech was able to learn to use a script in a six week period to greet teachers and collect attendance. By the sixth week he required only a shadow person to monitor the use of the script.

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What Causes Autism? A Brief Response.

What Causes Autism? A Brief Response.

There are very few responses to this question that can be backed by scientific evidence and there is a great deal of speculation discussed within scientific and social communities. Autism doe not discriminate and affects people all over the planet.

I read environmental news daily regarding environmental toxins and the potential relationships to the cause of Autism Spectrum Disorders. Students at the University where I teach often ask me what do I believe the etiology is… very difficult question to respond to.

Etiology, the cause or origin responsible for changes in typical development or health, is not as important to me as helping people who are living with a person with ASD. I believe that science will eventually solve many questions related to the etiology of ASD.

However, I cannot pass up this opportunity to share my personal belief regarding etiology…the toxic environment and toxic food chain may be responsible for some form of genetic change and adverse behavior observed in many people with autism. Man made toxins in the form of product may also be responsible for many of the serious conditions and diseases world populations suffer.  

Eat healthy. Eat clean. Many parents report desired changes in behavior with changes in diet and nutrition. Like many other interventions, dietary changes may show improvements in some people and not in others. There is no one size fits all treatment. If this type of treatment interests you I suggest you consult your physician who can refer you to a specialist and put you in touch with current research and practices.

However, it cannot hurt to offer your child and family choices that are free from manufactured toxins, preservatives and other so called protective and preservative additives to food. Try to be mindful of what you put into your body, what types of chemicals your household cleaning products contain, and what your furnishings and clothing are made of and coated with. 

So there you have it…my personal rant, and pet peeve for today.

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Is What You Want, What You Get at MacDonald’s Today?

I worked with a student for many years. His favorite verbal expression when he became uspset or distressed was to sing this jingle to me, “what you want is what you get at MacDonald’s today” This was expressed at a very appropriate times which ruled out delayed “echolalic” speech.

Why? Usually because he could not do or have what he wanted and did not have the words to express this to me appropriately. Sometimes children with autism communicate using unusual words, phrases, or jingles.

Children need to learn that what they want is not always on the menu. This is a teaching piece and can be very challenging and frustrating for both teacher/parent and student.  However, it is a very valuable lesson worth teaching.

More important to teach with this concept is how to cope with feelings when you cannot have what you want. Choices are very important. Even though you can’t have what you want, you can have one item or another. Providing choices often redirects focus and attending, providing the choices are of interest to the child.

Choices presented in a visual format such as a picture, photo, written word, or even the objects themselves provide immediate, concrete, information. A child may be able to avoid a meltdown or an increase in anxiety.

One way to practice this is to actually set a situation up where the child cannot have something they want. Be prepared with two other items or activities that you know your child likes and be prepared to provide it to them immediately when they do make a choice. Remember to reinforce the idea and label  ”good choice”. It is important to teach the meaning and language of choice so that your child begins to learn that the concept of choice.

How often do we take for granted the choices we have throughout our day? Often times children with autism become overly dependent on others for directing them what to do and how to do it. Their world becomes one of demands and commands. Learning about choice and  providing choices is one of the most wonderful gifts you can give your child.

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How Do I Cope with My Stress 24-7?

It is very common for parents and guardians to experience high stress levels related to caring for their child. Often days and nights may seem never ending running one into another. Stress and fatigue can make for an emotionally toxic environment for all members within the household. Statistics suggest that 80% of marital relationships dissolve with the stress, coping, and challenges related to the care and acceptance of a biological child with autism.

Take time out for yourself and your married relationship. Listen to your partners concerns, fears, and joys. Make dates outside of the home with your spouse at least once a week and if you are the primary caregiver, make time for yourself daily. Exercise and eat healthy foods to decrease stress and maintain daily stamina.

State and local governments usually have respite resources for children and adults with disabilities. Many outside agencies offer services that will individualize care for your child based on their unique needs. Networking with other families may provide invaluable resources and altruistic support.

Use visual schedules, visual communication, and develop routines with your child to support their independence and to decrease stress. Provide plenty of appropriate breaks throughout the day to meet your child’s sensory needs. Remember, if your child begins to look more autistic, then it is time to make a change, redirect focus, or utilize calming strategies that work for your child. Keep an observation journal to help you determine next steps and keep a personal journal to record your feelings and reflections. 

Above all, be consistent, follow through, be firm, and be  loving!

Choose your battles carefully and embrace your joys every chance you have! Your child will teach you what you need to know in order to meet, reach, and teach!

“It is common sense to take a method and try it. If it fails, admit it frankly and try another. But above all, try something.” – Franklin D. Roosevelt

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What type of Educational Setting Should I consider for My Child?

I experienced unusual feelings today while participating in an Individualized Educational Planning Team (IEPT) meeting. The parent was becoming frustrated. She wanted services for her child that were going to be soon cut off by public funding.  There was no one at the meeting who could secure a guaranty for the location of a future educational setting and services.

Seemingly frustrated and angry she said that if she did not get what she wanted she would insist her child be put in a fully inclusive general education setting, meaning that this child with severe expressive language delays, and auditory processing issues would be required to participate in a setting where stress levels could rise 100 fold due to unpredictable environments, social situations, noise levels, and excessive visual stimulus.

The likelihood that the child will look more autistic is almost guaranteed. It does not matter how good a school’s reputation is, how convenient the school’s location is to your daily routine, if you decide to put your child in an environment that increases stress there is a great possibility that you will see an exacerbation of the symptoms of autism.

If a child begins looking more autistic, then you might consider changing the child’s educational placement, something you are doing, or change what the child is doing. The value of a stable, organized, predictable, and safe environment, saturated with consistent clear expectations is imperative for the child with autism to progress and develop.

Children with autism can have a joyous, and meaningful life, if you as their parent, and others who provide services for your child will embrace and nurture their unique strengths and interests as abilities and not deficits.

Many people with autism have interests that the others may think are quirky, odd, idiosyncratic, and out of the norm, who cares what others think!?!  As a child with Asperger’s recently stated in an article in the Los Angeles Times (2010) my interests are not near as quirky as those of people obsessed with sports.

Many people living with an Autism Spectrum Disorder develop professional careers, are able to live independently with minimal supports, and others will have a greater dependency within living and working environments. I urge you to seek out ‘good fits’ so to speak, within educational settings and with people who have genuine positive regard for your child.

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