Neurotypicals

Yesterday, I watched a TV show on PBS - Neurotypicals. It's about the people on the autism who shared their experiences being different. How beautifully they tell us how they think differently and behave differently. I had a big thought when they say - Why we can't be different? Why do you want me to cure? Why can't we live in our own ways? Why do you want to fix us? Why can't you accept us as we are?

Yes, I also agree in some ways. Every person is different. Even two persons living together think and behave differently. They have their own views, own thoughts, own interests, likes and dislikes etc. Sometimes, they are also not able to understand other's point of view and they have conflict between them. So, why do we want to control them and fix them?

Every person is very much different. What is natural to you, doesn't mean that it's natural to others too. One is good in maths, but others may have difficult time to solve simple math problem. One is very good in sports, but other can be good in computers. One can be talkative and think loudly, other can be less talkative and think quietly. One likes to be with people and being social, but others can like to be alone and stay away from the crowd. That's OK being different.

Everyone knows that I am an introverted person. I was very reserved when I was a kid. I didn't have much friends - only one or two. I wasn't much talkative, still not. Few things didn't come natural to me. I was good in studies and always got good grades. But I was never social kid. I worked for 7-8 years in software industry, but it was very hard for me to take initiatives. I had to learn things hard way, when they were not natural to me. Still it takes time for me to learn anything new. Sometimes I suffer with information overload and feel frustration & irritated. I am also different.

Yes, my son is different and I have no issues about his difference. It doesn't mean I won't teach him anything. I want to teach him basic life skills. I want to teach him to communicate his feelings, his thoughts and his experiences about his inner world. I want to understand him and his sensory world. I want to help him and give him comfort. I want him to get exposure to various things, explore this world and give various options. Then I want him to decide what he wants to choose in his life. I don't want to control his life.

These are my thoughts. If you think different from me, you are welcome to share your thoughts. :)

Two Extremes

As you can see that I had a big break after my last post, several things were going on in my life. Most important thing was that my kids are growing up and they want more time, attention and effort to deal with them. My both sons are two extremes.

As I have written in my Computer Stimming Series posts, it was very difficult to deal with both the kids altogether. Still Tanishk likes all the electronic gadgets and can keep himself busy in stimming.  Still, it is very difficult to motivate him to do something else as he has not much interests. He doesn't want to learn anything, just wants to pressing something - buttons on TV, Computer, Fan, Microwave, Gadgets, anything. He is verbal. He is smart. To get these things, he can manipulate us. He comes to us only to get whatever he wants. He is not withdrawn kind of kid, but he is not interested in anything until unless he can get gadget in return. He is not curious at all.

My other son Tanay is extreme case of his brother. Tanishk doesn't want to do anything. Tanay wants to learn everything. Tanishk runs away from the puzzles, books, activities. Tanay wants to do more & more. Tanishk has no imagination, he repeats only whatever he has learnt from videos, TV, teachers and parents. Tanay has got a great imagination, he can make his own stories. Tanishk doesn't take interest in anything and doesn't want to know about anything. He doesn't have any curiosity. Tanay is a curious kid. I have named him as "Curious George". Tanay wants to play with his brother, and Tanishk pushes him back as he doesn't want him to come in his way.

Mother's Day 2013

Every year we celebrate Mother's Day. I have written about my last two Mother's Days - Mother's Day 2011 and Mother's Day 2012. I feel very good about being mother of two lovely sons. As they are growing up and developing their own personality, I am also enjoying motherhood. Parenting is a very important task of your life and should be kept on priority.

While mothering two kids, I realized how our parents did their best to give us such great values and education as much as they could. Now, it's our responsibility to do the same thing for our kids. It's give and take relation with kids. When we are trying to teach something to them, we also learn so many things. If  we want to get respect from them, we should also treat them with respect. Parents are always models for their kids.

Once you are older enough, you are comfortable with the skills, knowledge and information you got in your younger days. You don't want to learn more. But, when you have kids, you don't have any choice. Being a mother is a hardest role. When you are growing your kids and teaching them life skills, you are also learning from them.

When I was younger and not having kids, I was low tempered and impatient. But, my sons have taught me patience and to spread happiness every where. They are my angels. When they see in my eyes and give me kiss on my cheeks, I feel on top of the world.

What are your experiences??

Temple Grandin

Equally noted for her work on autism and animal husbandry, Dr. Temple Grandin is a visionary in more than the traditional sense. Diagnosed with autism in 1950 at the age of 2, Grandin has utilized the “wiring in her brain” to see things the way that animals do. Over the past 25 years her insights have literally revolutionized animal husbandry in the cattle industry.

She also works as an Autism activist. Based on her own experience, she advocates for early intervention and ABA therapy. She also thinks that every child with autism needs a mentor who can use child's fixations for teaching skills. She talks about autism and its treatments in TV shows, conferences and seminars, and also give interviews. Following is a her video on TED talk -

"Autism activist Temple Grandin talks about how her mind works -- sharing her ability to "think in pictures," which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids."

Autism Quotes

I hate Autism

I love my son. But I hate Autism. 

I feel happy when he smiles and laughs. But I hate Autism.

I feel proud when he comes to me, kisses on my cheeks and says - "Mamma, I love you." But I hate Autism.

I feel proud when he sings a song. But I hate Autism.

I feel proud when he reads, writes, does good academically. But I hate Autism.

I feel proud when he understands everything and listens to me. But I hate Autism.

I feel proud when he solves his problems. But I hate Autism.

I feel proud when he thinks and chooses things. But I hate Autism.
I don't bother if he is different or he thinks different. But I hate Autism.

I love his cute smile and spark in his eyes

I know in my heart that my son has a great potential in him. I am always with him and I feel that he have so much strengths. He is very cute and affectionate. His smile is contagious. He has great eye contact. He speaks and tells us clearly what he wants. He has his own interests and choices. He likes to listen to music and also sings the songs. He likes to play Wii and games on iPad / iPhone. He is hyperactive, energetic and great problem solver.

He is also good academically. He knows reading, writing and coloring. He is average in Maths, but good in puzzles, models and thinking tasks. When he is focused at task, he is at his best. He has good memory and remember roads too.

But when my son is unaware of his environment, I hate Autism. When he is lost with electronic gadgets, I hate Autism. When he can talk but can't do conversations, I hate Autism. When he can't understand reasoning and stuck on something, I hate Autism. When he bites his fingers and hurts himself, I hate Autism. When he doesn't act without prompts (still we have to prompt for everything, even for eating), I hate Autism.  When he wanders aimless and just lost in his own world, I hate Autism. But I love my son very very much.

Autims Quotes

Autism Quotes

Autism Awareness

April is Autism Awareness Month. Each April 2, Autism Speaks celebrates Light It Up Blue along with the international autism community, in commemoration of the United Nations-sanctioned World Autism Awareness Day. Light It Up Blue is a unique global initiative that kicks-off Autism Awareness Month and helps raise awareness about autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are among the hundreds of thousands of homes and communities that take part to Light It Up Blue. You can get more details on Autism Speaks - Light It Up Blue.

Last year, Autism Speaks had organized fundraising campaign with "Toys R Us". There was a big poster in all the "Toys R Us" stores worldwide with photo of my son wearing blue dress. I feel very proud when I got to know that my son is a part of this big event. "Toys R Us" also used his photo on the Facebook cover for whole month.

Last year I have written a post about this event - Light It Up Blue

Yes, we celebrate April as an Autism Awareness Month. But I don't think, one month is enough to spread awareness. For us, who are dealing every day with autism, every day is an Autism day. There are so many people around us, who still don't know what is Autism. We have to keep telling people about autism and should raise awareness daily.

Autism Quotes

Computer Stimming - Part 3

Continuing from the stories Computer Stimming Part 1 and Computer Stimming Part 2, this is the final part of the story. I don't want to get anyone bored, but without mentioning all these incidents, I won't be able to explain about computer stimming which is a big part of my life. How this affected me and my son's life, his learning, his thinking, his attitude and his behaviors. Computer and other electronic gadgets were feeding him continuously and became hindrance to his learning. He kept talking repetitively what he heard as I mentioned in part 2. 

Till June, 2012, I was very much frustrated and upset about his computer stimming. But, I was not able to control this situation fully as I was not there always to control his access to electronic gadgets. My younger son was born in 2009 and he also needed my attention most of the time. So, I had to switch myself between these two kids. 

Without explaining my situation, this post won't get finished. I was alone with these two kids. My husband used to come late after 7:30 PM. Tanay, my younger son was too sensitive to the noise and Tanishk was very loud when he used to make tantrums. (Still, he is very loud. I can not stand with him, when he shouts and screams.) When I try to take away computer from him, he used to make tantrums and very loud noises. So, when Tanay was sleeping, I did let him do whatever he is doing.

In June 2012, when it became a little easy to make Tanay busy in something else when I was working with Tanishk, I decided to not to give computer to him. How can I forget that day? He came from the school and he asked for computer. He kept asking, crying, screaming, banging, stomping, hitting for 1 hour. Next day, same thing happened, but only for 10 minutes. After that day, his attention and focus were increased a lot. He doesn't touch the computer, and if he gets he gives it back in time. I don't let him stim on any gadget. That was the major achievement for me.

Still, he gets electronic gadgets but for the limited time and as a reward. He loves music. But now, he plays music appropriately and also play games appropriately. He reads stories. His focus is improved a lot. Still, sometimes he is tempted to do wrong things. Still, he repeats the talks from videos and audios. He sings songs and also tells stories.

Now, I can say that I have taken right decision. I told my readers this story for telling them - "Please don't let your child get lost into these electronic gadgets, he / she can learn them later. Engage them in other useful activities instead of TV and Computer. Use them for short time."

Auburn Smith

This post is adapted from the news at Easter Seals site. I like to read and write about the people who have  some disabilities but they accepted their challenges and have become successful in their life. 

Auburn playing tennis

Auburn Smith

High school sophomore Auburn Smith is a nationally ranked tennis player and aspiring musician who enjoys riding her adapted bicycle and loves to travel. She doesn't let a disability get in her way.

There was a time when her doctors couldn't imagine Auburn doing even half of what she does today. Born with spina bifida and clubfoot, she was just a day old when she had her first surgery. Her parents were told that she would likely never walk – something no one in the Smith family accepted.

At seven months, Linda and Jim Smith enrolled Auburn at Easter Seals for inclusive childcare and therapy. With both parents working full time, Easter Seals was the one place where Auburn could have her physical therapy during the day at childcare. Linda, a respiratory therapist, says she recognized immediately that they were in the hands of top-notch professionals. “There was such a calmness about them,” she says. “As a new parent of a child with special needs, it was wonderful to have that steady guidance. We knew we had come to the right place.” At 18 months, Auburn had surgery to realign her feet and the Smiths were amazed by the optimism of Easter Seals’ early intervention team. “They told us they would have Auburn walking by age 2,” says Linda, “and they did. I can’t describe in words what that was like. After that,” she says, “everything else seemed much more attainable.”

Auburn transitioned from Easter Seals childcare to her local school when she was three. But as she’s grown and faced new mobility challenges, Easter Seals has been there to improve her gait and balance or get her fitted for new leg braces.

These days, Auburn is on the honor roll and busy at school. Her teachers say she projects a calm confidence and that she is wise beyond her years. Her ceramics teacher says she’s a rock star and “a one of a kind kid.”

Now, when she comes to Easter Seals, it’s for fun. Tennis Everyone, a partnership between Easter Seals and the United States Tennis Association (USTA), introduces kids with mobility challenges to tennis. Auburn’s coach Nancy Olson is a two-time Paralympic silver medalist in wheelchair tennis. Auburn works with her longtime physical therapist at Easter Seals to strengthen her back and side muscles so she can better maneuver her sports wheelchair on the court. A natural at the game, Auburn says the rewards of tennis go way beyond winning: “I love the competition and meeting new people and how it keeps me healthy.”

Her dad, Jim Smith, is a trauma nurse who works nights so he can be home during the day for Auburn and her sister, Kellie, 13. Auburn also has an older sister — Ashley, 22. Her companion dog, Alpine, makes the family complete. At home, Auburn has chores, homework, and other responsibilities, like any teen. “This is our normal,” Jim says, noting that it was at Easter Seals the family learned to take things in stride. “Easter Seals has been a godsend to us.”

Adapted from Easter Seals

Slow down, take a breath, and share the moment!

When I work with my son, sometimes I lose my patience. What is this? He doesn't want to listen. He doesn't want to comply or perform tasks. He has become very much resistant and oppositional. He doesn't want to do anything at all. He avoids me when I ask him to do any task. But it's not that he has not understood the instructions, but he doesn't want to do at any cost. And when I am in hurry and I have something in my mind, I just want him to finish the task. Reading this post on Autism Discussion Page, I realized that what's going wrong. I have to slow down myself to make him comfortable. The task performance should not be important than his comfort. I want him to learn things naturally.

Slow down, take a breath, and share the moment!

Parenting a child with autism often means wearing multiple hats (mother, father, therapist, teacher, researcher, advocate, social mediator, biomedical doctor, etc.). You have to continually multi-task to keep up with the chaos. Parents of young children on the spectrum often have an overwhelming sense of urgency, to do as much as possible to help their child overcome their challenges and develop and grow to their maximum potential. This is very understandable and recognizable in many parents of young children. However, we have found that often we move too fast in our urgency to provide for our children. The world moves way too fast for these children, and we need to slow it down to maximize learning.

The world moves too fast for children on the spectrum. They have trouble processing multiple information at one time, and tend to have problems with delayed processing. Because of this, our world simply moves way too fast for them. Slow things down and savor the moment. Pause to let them process and think! Take little things in the day and slow them down, highlighting the important details, so they can reference the important things. When using language with children on the spectrum, there are three important factors.

1. Slow it down and use shorten your sentences. Speak in two to three word phrases if the child only speaks in short phrases. It makes it easier for them to process. The longer the sentence the more jumbled the information becomes. Use only as long of sentences that the child uses in return. However, even for very verbal children, shorten sentences makes it easier for them to process.

2. Use less words and more nonverbal language (exaggerated gestures and animated expressions) to communicate. Most of the children process better visually then they do auditory. In addition, it gets the child referencing your nonverbal language for information. Children on the spectrum will usually listen to your words without referencing you visually for information. This is one reason why they have a hard time reading body language. Slow it down and use more exaggerated gestures and animated facial expressions to convey meaning. When the child starts to forget to reference your nonverbal language, you simply pause the activity until he references you again. Once he picks this up, he will start to reference you more naturally.

3. When using words, use more "declarative language" instead of "imperative language." Imperative language is any statements that direct a specific response from a child (questions, directives, instructions, prompts, etc.). Declaratives are any statements that invite, but do not direct a specific response from the child (statements share information, ideas, thoughts, feelings, experiences and perspectives). Normal interaction between two people usually consist of about 20% imperative (questioning, directing) and 80% declaratives (sharing ideas and information). However, when we interact with children on the spectrum the ratio is turned around; usually 80% imperative and 20% declaratives. Children on the spectrum tend to freeze up and resist imperative language. They tend to have strong "performance anxiety" and pull back from imperative (directive language). Just like us, no one likes to be questioned, prompted, directed all the time. In our experiences with families, changing (rephrasing) our language is probably the strongest tool we find. It is as simple as changing our language from "John, what is the matter?" to a descriptive statement like "Wow Johnny, you really look upset to me!". You will find your child providing much more information. Try it on your teenager when he comes home from school. Instead of saying "How did your day go?" (which usually gets one word "fine"), try "You look like you had a good day today (or bad one)" and watch the kind of reaction you get. Usually the child will go into much more detail. We find that we usually get three times more interaction from the child when we use declarative language.

4. Learn to pause and wait! Children with delayed processing need time to respond. They have to process what is coming in, appraise what is needed, and formulate how to respond back. In our haste we often jump in and continue to prompt, or respond for them. Waiting is the hardest thing to do. It is much slower than our nervous systems want to wait for. It tasks patience and practice, but is very important. Slow it down, and give them a chance!

Computer Stimming - Part 2

As I have written in my earlier post Computer Stimming - Part 1, Tanishk learnt to use all the electronic gadgets. He knows what does he want. He learnt typing himself. He was always good in reading. He started reading in 2.5 years after he started speaking. His therapists used flash cards to teach to label things and then he learnt reading through flash cards and bumble bee videos. We never had to teach him reading.

Tanishk used to watch his favorite videos on YouTube - TOONBO "ABCD", TOONBO "Alphabet Song" and Dancing babies with diapers (indian version video). He also got interested in Hindi songs and he used to ask us his favorite songs on YouTube - Pocket Mein Rocket Hai, Yeh ishq hai, Nagada Nagada and Suraj Hua Maddham. He learnt to start these songs himself.

When he became an expert in YouTube, he started to explore more videos. He started to watch any video (Not meant for his age). He also explored more things on the computer. His favorite program on the computer is Windows Media Player. He used to listen to the songs on the windows media player and liked to see the patterns on the screen. He gets excited by looking at patterns and starts to jump, laugh, run here & there. I became a little bit scared when I saw him showing odd behaviors.

He had learnt to use every electronic gadget - iTouch, iPad, iPhone, Computer, DVD Player, TV and Wii. He was an expert using all the gadgets appropriately, but he was only interested to use them inappropriately. He started to go into the settings and do the changes. He used to shut down the system and restart again. He plays the games in the wrong way. He plays the same videos again & again. We tried to limit his access and only give him the electronic gadgets as the re-inforcer. But whenever the gadget was taken away, there were lot of tantrums (jumping, banging, shouting, screaming etc.).

Here, I want to mention that he is verbal and is also an expert in copying all the verbal tones (he says or sings the same way it was said or sung). His articulation is very good and copy all the talks he have heard. He also sings the music in same way, but all words are not clear. Later, he started to sing inappropriately knowingly. He is habitual of doing things inappropriately, even he knows what is appropriate.

Then he went one step ahead and started to forward all the videos and songs. He liked that forwarded noise and became habitual of it. And he started to repeat the same forwarded noise verbally. That made me feel very upset.

So, electronic gadgets are his obsession. In the morning, he wants them. Whole day, he wants them, In the night before sleep, he wants them on the bed. He lost interest in other things totally. He does other tasks only to get his favorite gadgets and to use them inappropriately.

Computer Stimming - Part 1

This is era of technology. World is changed into the electronic world. Today, you will find electronic gadgets that fulfill your everyday needs. These gadgets can be anything from a grinder to a camcorder to a laptop to an IPad / IPhone. World is connected electronically through internet. It has become very easy to communicate to the people who are very far from you.

All electronic communication devices (Computer, laptop, IPhone, IPad etc.) are great help to Autism world too. The autistic kids and adults are now able to communicate through typing without looking at the person. It was a great help for them to open up and feel connected. So many apps are also developed for them to learn new skills (Academic, Language, Social etc.).

Examples of such people for whom the world is changed after learning the electronic communication devices are - Peyton Goddard and Carly Fleischmann. After starting communication through these devices, even they were able to tell their experiences they had in their childhood life.

Nothing is perfect in this world. Everything has its uses and misuses like people who have talents and shortcomings both. Same is the case with these electronic devices. It also depends on the people how are they using these devices. And mostly autistic kids are used to do things inappropriately. My son is one in those kids.

I have read few similar stories through blogs, I got to know that I am not alone. Few other parents are also facing the same problem. One example is here - Be A Good Mom (Stims oh boy the stims). I thought that I should also share my story. It's a very long story, so I am writing in parts. -

Before coming to US
My son Tanishk was born in India. When he was a toddler, he was cute and enjoyable kid. He used to cry very little. On his 1st birthday, he was not interested in people but their cell phones. We were very amazed  to see that how he has learnt to start music himself. He didn't respond to his name when he was 18 months old, but he used to respond when he hears phone ringing or music on TV. He loved to watch Indian ads on TV and few ads were his favorite ones. He liked to watch Bollywood actors Shahrukh Khan and Urmila Matondkar in ads. We were sure that he doesn't have hearing issues as when the ads started, he was used to come so fast even from another room. But, we were very much concerned that why he is not responding to us.

My husband used to work from home those days. Tanishk was so much fascinated by his laptop like all the kids. He used to press buttons to explore how it works. One day, we saw that he was sitting on the laptop. My husband had to work in closed room and he had to put off the computer when he was not there.

We used to make different sounds and calling him in hope that he will respond to us. But no, he never respond to any noise except TV or phone. He used to respond only one word - "Orange". Orange was his first favorite fruit and still he loves it.

After coming to US

At early age, Tanishk was interested in all the electronic gadgets like all the kids. So, we didn't give much thought about it. We came to US when he was 2 years old. As time passed, Tanishk kept exploring the electronic gadgets. He  had learnt how to operate Phone, TV, DVD player, Computer. We were very happy that he used to watch videos and also liked to listen to the music.

But problem started when we realize that he wants to watch the particular video / particular part of the video or to listen to the particular song. He wanted to repeat videos and music again & again. We couldn't leave him alone as he kept pressing buttons on the DVD player or computer.

He learnt to operate the computer, and also learnt to start YouTube. Earlier, he was used to ask us for particular video or songs on YouTube. He learnt himself to type and started to watch the videos on YouTube. Once more, we were amazed to see that. He used to listen to appropriate songs. Everything was going fine.

One day, I realized that he has started to stim on the computer too. It happened gradually. He used to enjoy and we were happy that he is enjoying. He started to ask for the computer every time, he gets it when no one is there, he started to play windows media player and see patterns (visual), he started to watch inappropriate (not appropriate for his age) videos, he plays the videos and gets excited (jumps, shakes hands, runs here & there), doesn't want to leave the computer, melt-downs (jumping, banging, stomping) started when computer is taken away.

Signs of Autism

Look At Yourself

That's why I like the page Autism Discussion Page. Bill Nason, owner of the page, explains everything so nicely and so intensely that I feel somebody is guiding me and there is someone who can understand me and my child better. He knows everything and can discuss on any aspect of autism. When I am frustrated and stressed, I read his page and feel supported and relaxed. When I talk to my husband, I always refer this page. He asked me whether I am fan of this page. Yes, I am a big fan of Autism Discussion Page.

Look at yourself in the mirror and smile

At the end of the day, as you drag yourself to bed, look in the mirror and smile! You made it through another day. Regardless of the challenges that were presented, how much you feel you accomplished or didn’t complete, you made it through another day protecting your family, advocating for their needs, and scaffolding this chaotic world for your child. You may feel completely exhausted, that you are defeated, like you said and did everything wrong, and left behind a million things you have left to do! However, if your family is safe, protected, and receiving your love, you have had a successful day! 

Between running between therapies, meeting with professionals, advocating at school, dealing with a meltdown in the middle of Kmart, arguing with a family member who feels that you are parenting wrong, chasing your child as he escapes down the block, and watching as your child changes clothes twenty times before he finds the one outfit that feels comfortable, you may not feel like a success! Believe me, most parents of children with special needs are super human! They take on more challenges and stress, and have to multitask more than any other parents. It is a new battle everyday and you tackle them as a passionate soldier! You enter challenges for which people do not have answers. You are often alone, facing challenges that most of us would run away from. Why do you do it? You have no choice! You are your child’s voice, protector, mentor, source of love, and the only one who truly knows him. You are his link to the world, and with every day that passes, you have served that role with honor and passion. So look at that face in the mirror each night and smile! You are one awesome person!!

Emotional engagement

Earlier, I have posted few posts from the Facebook page Autism Discussion Page" and I found that every parent / caregiver / therapist or any autism professional must read this page. I know, dealing with autistic people (kids and adults) is very tough task, but with a good understanding and strategy we can reach to their hearts. 

Emotional engagement with severely impaired adults!

I have the privilege of consulting with many individuals that have severe impairments and multiple behavior challenges. They are often either living in institutions or community group homes. I used the exact same principles to teach "safety" in my presence, and trust in my interaction. I start where they are at, identify their interests and comfort zones, and take what little leverage they give me to teach social engagement.

One individual, I had the pleasure of meeting, was very aggressive and required one on one staffing to be within six feet of him at all times, to protect himself and others from being hurt. His name was Eric. Most interactions between staff and Eric were instrumental in nature (directions, prompts to do things, or not to do something). Eric did not feel connected with staff, so obviously did not feel safe and accepted by them. He had to control all interaction and activity around him to feel safe and predictable. Eric would typically refuse to engage with staff or comply with daily activities. He wanted to be left alone to engage in self stimulation most of the day.

When I first met Eric, I ask staff what he initiated on his own that he enjoyed doing. The only thing that staff could come up with was "ripping magazines." He enjoyed ripping pieces of pages in magazines and then dropping them in a pile on the floor. When I asked staff if he does this a lot, they reported “no”, because they keep magazines away from him. Since this behavior of ripping was not the “norm”, they defined it as being destructive, and found it to be problematic. Unfortunately, staff did not see this as a strong interest that they could use to establish an emotional bond with Eric. This behavior gave me a self-directed interest for this young man, that I could use to create engagement (we-do activity) around.

I sat down next to Eric, introduced myself, and put my hand out to shake hands. He refused. I shared that I had heard that he was good at ripping magazines and that I would like to see him do it. I gave him a magazine and allowed him to start ripping, perfectly straight, narrow pieces off the pages. I marveled and commented on how well he could do that, and expressed interest in doing it myself. I started slowly ripping paper right in front of him, face to face, within easy vision for him to reference me. As he ripped, I imitated him, animating how I was trying to do it as well as him. I would drop my pieces on the same pile as his. I commented on how well it felt to rip the pages, and he would look up at me like I was weird! Periodically I would reach out my hand in gesture of acceptance and he would gradually reach out and lightly touch mine. I continued to follow his lead, imitate what he was doing, and celebrate with words of acceptance and frequent give "five." 

After several minutes of this, he seemed to feel comfortable with this level of engagement, so I decided to throw in a variation, to stretch his comfort zone. I put my magazine down and asked him if we could rip together. I slowly reached over and started a small rip at the top of the page, and motioned for him to finish ripping it. He looked a little anxious, but followed my lead. We proceeded to tear and rip together, me starting the tear, and him finishing it, then dropping into our pile. Now we had back and forth interaction, with both of us playing an active role in ripping. I would invite him to celebrate after every three or four rips by putting out my hand for him to reach out and give me five. I continued to give animated emotional expressions that I enjoyed sharing this experience with him. A couple of times he smiled. We were using an activity that he felt comfortable with and enjoyed doing, to build reciprocal engagement around. 

Next I wanted to see if I could expand on this activity. I wanted to get him up to a table to rip there, but felt he might be hesitant to move to the table. I had staff place out two glasses of pop (which is his favorite drink). We went to the table and shared drinking pop together as I commented on how much fun I was having ripping magazines with him. I decided to try expanding it to making a collage of the bits of paper that he ripped from the magazine. As he ripped a piece of the magazine I would paste it onto poster board to make the collage. He seemed to find that interesting that we could use the pieces of page for something after he ripped it. He ripped, and I pasted, sharing the experience, and frequently celebrating with "give fives" and emotion sharing. Next, he would rip, I would put glue on the piece, and give it back to him to paste on the board. We filled up the paper and hung the collage on the wall, commenting on how nice it looked, and celebrating as usual. 

In a matter of about 40 minutes, we had established a social connection together, around an interest that people were typically defining as bad and limiting his opportunities for ripping. I had started where he was at, engaged myself into an activity of interest for him, let him initially lead, while I imitated his action, and frequently celebrated with "give fives" and emotion sharing. Once he felt comfortable with that I expanded on the activity by adding variations to it. This resulted in co-regulating back and forth interaction, where we helped each other in completing the collage together. This was a real eye opener for staff to see that the avenue to socially connect with him was validating and engaging in the sensory preference (ripping) that he found rewarding. From there the staff were given directions to bring in all the old magazines they could find and do this activity at least twice a day to build a social connection with him. Over time both this young man and staff started to feel more comfortable and connected with each other, and eventually expanded the "we-do" activities into a number of reciprocal, interactive activities together.

A Mother's Autism Prayer

Autism Sayings

“What would happen if the autism gene was eliminated from the gene pool?

You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”

― Temple Grandin

Differences between Tics, Compulsive Behavior, and Self Stimulation

Here is another post from "Autism Discussion Page". It's a nice explanation of different behaviors shown by kids with autism. -

Differences between Tics, Compulsive Behavior, and Self Stimulation

Are your child’s repetitive behaviors tics, compulsive behaviors, or self stimulation? The repetitive behaviors in all three conditions serve different functions. Tics are a neurologically driven, often involuntary. They can be very jerky, not a smooth rhythmic pattern, and often involuntary. They usually involve motor musclegroups (eye blinking, facial twitching, etc.) or vocal noises, sniffing, throat clearing, or snorting type patterns. Usually the child has multiple motor patterns, and at least one vocal tic. They seem to serve no functional purpose for the child. The child may feel the “urge” coming on, but have very difficult time stopping them. The child do not enjoy the tics, and often feels frustrated in not being able to control them.

A true “compulsive behavior” (as compared to a fixation) is driven by anxiety and often result from “obsessive thoughts”. The person feels driven to do it because of anxiety and will become more anxious if you block it's occurrence. They are aware of and have some control over the behavior, but feel “compelled” to do it, and feel very anxious if they don't do it. They often do not feel good, the child is driven to do it, because they feel anxious if they don’t. The disorder can consist of strong repetitive obsessive thought patterns (intense worries, exaggerated fears, etc.), compulsive behavior patterns (washing hands over and over, repeatedly opening and shutting doors, compulsive orderliness, etc.), or both.

Self stimulation is a more voluntary, controlled sensory seeking to calm and organize the nervous system. These repetitive behavior is used to sooth and calm the nervous system when over-aroused, alert the nervous system when under-aroused, and block out unwanted stimulation when overwhelmed. They usually consist of repetitive “rhythmic” movement, auditory, or visual patterns. Self stimulation is usually a voluntary pattern the child uses to help regulate their nervous system. Usually if the repetitive pattern, is rhythmic in nature, and feels good, it is not tics or OCD, but self stimulatory.

Autism

Alpine Learning Group

Autism

Autism

Do you think I am having fun!

Such a nice post from "Autism Discussion Page". Reading this, I myself realize that how sometimes working with my son, I start to control him instead of supporting him. We all love our kids. We want them to learn all the skills, but sometimes we forget that they can not learn forcefully until unless they are interested in the activity. -

“Do you think I am having fun!” From the child’s perspective! 

“Do you think I am having fun when I scream, fall to the floor and slam my head repeatedly?”

“Do you think I am enjoying it when I meltdown in the middle of a classroom with my peers staring at me?”

“Do you think I am having fun when I cannot sit still, and am running around the room, bouncing off the walls, ignoring your assistance?”

“Do you think I am having fun when I am staring into space, with glassy eyes, and turning away to block you out because I am overwhelmed and shutting down?”

“Do you think I am having fun when I repeatedly hit my face with my fists until all the frustration is gone?”

“Do you think that I enjoy hitting, kicking, and biting you when I love you?”

When I hear people discussing my behavior, what is there that leads them to believe that I like to do this; that I find enjoyment in creating havoc, stress, and anxiety for myself and others? Do you think I would do this if I had more adaptive ways of dealing with the problem? When I am continually acting out to gain your attention, you say I am “seeking attention” (like I like it) and put me on extinction. Do you ever think about “why” am I needing constant attention in the first place. Why am I acting inappropriately to obtain attention? Instead of ignoring me, try and listen and understand why I “have the need” to act that way. Seeking attention may be the obvious observable function, but ask yourself (1) why am I needing so much attention, and (2) why am I using this behavior to get it. Don’t just “ignore” me. It doesn’t teach me anything, but makes me feel isolated and unwanted. It does not deal with why I need the attention, or teach me more appropriate ways of getting it.

When I act out when you place demands on me, yes I may be trying to “escape and avoid” these demands, so you force me to comply, so my acting out is not rewarded by allowing me to escape. You say I act out to “manipulate” you to avoid things I do not like. Have you asked yourself “why does he feel the need to escape or avoid?” If most children willfully comply, why am I resisting so adamantly. Don’t you think if I had the tools, and felt confident enough to do it successfully, that I would also “want” to do it?

When I become overwhelmed in events with overpowering sounds, sights, and smells, why would you think that forcing me through it is somehow helping me? If my brain becomes overloaded with stimulation, how can I be expected to “handle it?” What is that teaching me, if my brain doesn’t allow me to learn during those moments?

I wonder why you do not ask these questions. You call me a manipulator, lazy, disrespectful, oppositional, etc, like I somehow intentionally choose to act this way; assuming I know how to act differently. At your meeting, you sit at a table and discuss among yourselves how I must learn to act better, to not be spoiled, learn to respect others, and comply with your demands; like I am so how having “fun”, intentionally choosing to act this way. You don’t first look at what you might need to change, but try to force change on me. You scold, force, punish, and restrain me, like I purposely want to be this way. Are you that DUMB to think that if I knew how to do it right, and I felt confident doing so, I wouldn’t have more “fun” being cooperative and receiving the positive attention and rewards like all the other children. Look at my face! Look at my actions! Look at my emotions! How do you assume that this is fun!

Please let me tell you, if I felt good about myself, confident in what I am doing, and safe and accepted by you, I would not be acting this way. Either the demands of the situation are greater than I can handle, the way you are supporting (or not supporting) me is overwhelming me, or I do not feel “safe” in doing it. I do not mean to “piss you off!” I do not find joy is making you angry and lashing out at me in frustration. I am not having fun in watching everyone stare, scold, and ridicule me into submission. How do you think that timing me out, taking away privileges, and restraining me helps me to feel safe, accepted, and competent in your presence!

Please, when you look at me struggling, assume that I am feeling anxious, insecure, and most importantly “inadequate” at the moment. The stronger the opposition the more insecure and inadequate I am feeling. Then, ask yourself how can you (1) change the expectations and demands, (2) how can you provide greater assistance to support me, and (3) teach better skills for meeting these expectations. And most importantly, in the heat of a meltdown, think “how can I help him feel safe”, not “how can I control him.” And when it is over with, ask yourself how you can change the conditions next time to avoid setting me into “fight or flight”, rather than how can you punish my behavior into submission. You are the one placing me in these conditions, you are the one who has to learn to change! Yes, like for all children, I need realistic boundaries and consequences to learn to be successful, but meet me where I can realistically succeed, be a supportive mentor, and please do not assume that I am having “fun” and “prefer” to act this way!

Thanks you for listening to me. Please do it more often!

“Learning” through “relating!”

Here is one more post from "Autism Discussion Page" series. Really, I like all the posts on the page.

“Learning” through “relating!” Activate the right side brain!

Children on the spectrum have weak neurological connections between the different brain centers, rendering the processing of multiple information simultaneously, very difficult. It makes it difficult to integrate the various brain centers to maximize brain functioning. One of these integrative functions is integrating the left brain (logical, analytical, detail/factual) with the right brain (intuitive, creative, social/emotional relating). For people with autism, it is well known that they are weak in the area of social referencing, perspective taking, reading nonverbal communication, and emotion sharing; all which are important in social relating. Not only is social relating compromised, but much of our early learning is through “social learning”; learning by referencing others for information, imitating, and following the lead of others. Most early learning occurs through this relating with others. For children on the spectrum, they do not learn by taking the perspective of others, and learn by following their lead. They have to learn by individual exploration; missing out on all the “learning through others” that most child thrive on.

The recent brain research in the area of “brain plasticity”, has shown that the brain is constantly rewiring itself through experience. With each new experience, and repetition of experiences, the brain creates new neurological pathways. The brain can develop stronger neurological connections though repeated experiences that pave the way. Given this, it is important that we provide the child numerous exposure, through normal daily activities, to “experience sharing” with others, especially the primary caregiver (parents). This does not mean more rote social skills training (teaching discrete social scripts), or throwing the child into social groups and overloading them with trying to regulate with multiple peers. This is too confusing and overwhelming to them. Teaching the child “relating skills” occurs through the one on one, daily interactions with the primary caregiver (parents). These social, relating, pathways develop by but doing things together, sharing the experiences together, which sets the stage for children to (1) reference you for information, (2) sharing emotion together, (3) referencing your perspective, and (4) co-regulating, staying coordinate, in activity together. This joint attention and experience sharing with another can occur through “shared” engagement” in normal daily activities.

By “doing it together” in We-Do activities (see photo presentation on We-Do activities at Autism Discussion Page); we incorporate this essential learning into all daily activity. By “doing together” and learning through relating, we bring into play the parts of brain responsible for “relating” and develop stronger neurological pathways to those regions. We bring into play the right side of the brain, that needs further strengthening. Also, by changing from “praising” performance to “celebrating” doing it together (see three step social reward) we are developing social reciprocity (the social dance of sharing an experience). This learning through “sharing” an experience with others, provides constant exposure and activation of these neurological pathways, creating stronger social/emotional relating. While we are teaching essential life skills, by doing it together, we are also teaching social referencing, emotion sharing, and relating skills. The child is learning “through” doing with you, referencing your guidance, feeling competent learning through you. It builds stronger emotional attachment, greater relating skills, and stronger social learning skills.

So, build “relating” into your normal daily routine activities with your child, by doing them together, helping each other out, and becoming an essential element in their activity. In addition, move from praising task performance to “celebrating” doing it together, with three step social reward (physical contact, gesture, and declarative statements). By doing so, you are bringing the “social areas” of the brain into play, and developing greater neurological pathways through these experiences. For specific guidance in building these experiences and skills, please see the photo presentations on “Emotion Sharing”, “Reciprocal Interaction”, “Co-regulating interaction”, “Experience sharing” and “We-Do activity.” at Autism Discussion Page. Start developing these right brain functions by strengthening the neurological pathways in these areas.

The Challenges of Tooth brushing!

I like the Facebook page "Autism Discussion Page" and want to share it with my blog friends. I will keep posting few of them.

The Challenges of Tooth brushing!

Tooth brushing is very intrusive. When training staff we used to have them brush each other's teeth so they see could feel how intrusive it is. We don't realize that we know exactly how hard to brush, where we feel sensitivity, how to miss the gums, and how fast to brush, when we are brushing our own teeth. To have someone shove a toothbrush into your month, and brush your teeth, without you controlling it can be really discomforting. In addition, many of these children have strong sensory sensitivities. Kids that tend to be tactile defensive (touch) are often orally sensitive. There are a variety of things to try, but again, I would start by validating that you (1) recognize that brushing causes discomfort for him and (2) that it is understandable. Then from there I would try.

1. Work slowly and talk him through it, telling him what side is next.
2. It often helps to have a set number of strokes you use for each side (top, bottom, side, front, etc.). Like five back and forth strokes. Count out each stroke. Counting gives the child a definite end, allows them to judge “how much longer”, allows them to hold out a little longer, and gives them something to mentally distract them.
3. It is best to give the child as much control over the brushing as possible. Brush five strokes on one surface, then pause, and wait for child to let you know when ready for next.
4. Let the child do as much of it as they can. Even if they do poorly you can go over it.
5. Throw away your toothbrush, it may be too hard of bristles. Use a sponge toothbrush call a toothette. It is a sponge that is soft and delicate to the gums.
6. Experiment with different toothpastes to find what the child likes the best. Or, don’t use toothpaste at all. Simply use water. If you child will use a mouth rinse, this also can be added. 
7. Work slowly, and pause whenever the child shows discomfort. Continually show the child you are working with them, pausing when discomfort occurs, and letting them control the pace of brushing.
8. Many children with oral sensitivity like to use a battery operated, vibrating tooth brush. The vibration tends to dull their oral sensitivity.
9. Have fun with it. You brush his teeth, and let him brush yours...lol.
10. Reinforce the child with a strong reward once the brushing is complete.
11. Put up a chart, and let the child get a star for each time they brush. After they fill up the chart (five squares, one for each star) then they get a special reward.
12. If child doesn't like the taste of toothpaste, start off with just water, no toothpaste. Then slowly put a little on. There are liquid washes that you can substitute for those who do not like paste.
13. For some kids we actually use a soft washcloth over our finger to rub the teeth and gums, instead of a toothbrush.

When in doubt, stay supportive and try not to force. I know it takes time, but having someone force a toothbrush around your mouth can be very intrusive.

Happy New Year

Wish You All A Very Very Happy New Year :)