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