You’ve Got a Friend in Me

Caleb’s school year is coming to an end and as we look back and reflect on this past year we are amazed at how well things turned out. I think back to last August when the school year was just starting and I remember our concerns over whether we were making the right decision or not. This was the first year that Caleb was mainstreamed into a general ed 3rd grade classroom.

This is scary for the parents of a child with Autism because you worry that other kids may tease your child or that your child will be so disruptive that the teachers, other students or parents will complain. Dwight and I were not sure how Caleb would adjust to being in a classroom and wondered if he would be happy and accept the new setting.

Change is always hard for a child with Autism and there were lots of changes for Caleb to adjust to. There would be a much larger class with more students and more noise and distractions. There would be a more rigid schedule with more academic demands and more rules to follow.

Dwight and I felt that it was very important to be open and honest with the Caleb’s classmates. We wanted to share with them what Autism was (and what it wasn’t) and also suggest ways they could include Caleb and communicate with him.

We visited the classroom the first week of school and gave a short talk to the class explaining that Caleb was like them in many ways : He likes pizza, swimming and Spongebob SquarePants.

Next we pointed out that there are some things that were “different” about Caleb:  He may flap his hands or make other gestures when he is excited. He cannot talk so communication is often difficult … these difficulties may cause Caleb to get frustrated and mad and he may cry or show other signs that he is upset.

We taught them some simple sign language that they might be able to use to talk to Caleb and gave them some games and activities he enjoys and ways they can play with him and interact with him. We told them that the reason we wanted to have Caleb in their class was not just for academic reasons, but also because Caleb needed to learn how to play and make friends. They all seemed eager to help Caleb and Dwight and I hoped that they would continue to have that enthusiasm throughout the year.

A couple months into the school year I went on a field trip with the class and I was amazed at how well Caleb was accepted. The students were all so helpful and kind to him and they would even give him high-fives and fist bumps. It was so neat to see how Caleb’s classmates interacted with him. He had made one special friend, Colin Lee, who really helped Caleb and told me that Caleb was his “best buddy”.

I think the students have gained a lot from Caleb being in their class too. One of the girls told me that she wants to be an aide or therapist and work with kids with Autism when she grows up. Most of these kids had never heard of Autism before Caleb came into their class. They were even a little scared of Caleb at first. But now they don’t even notice the differences in Caleb because they have become used to him and they accept him the way he is.

Caleb’s teacher, aides and support staff are wonderful and have really helped accommodate Caleb so he can be in the classroom with his peers. His teacher, Mr. Henry, has been amazing with Caleb. His flexibility and patience has helped Caleb feel welcome in the class and he has now started to look to Mr. Henry for instruction which is huge!

A few weeks ago the class started writing a play about their school year. One of the things they all agreed upon was how much Caleb had been an important part of their year and how much their perception and interaction with him had changed since the year started. When Dwight and I, along with Caleb’s grandmothers, went and saw them perform the play they had written we were overwhelmed with joy as we watched the kids talk about Caleb and how much they enjoyed having him in their class. When they concluded by singing the song from Toy Story “You’ve Got a Friend in Me” we all had tears in our eyes as we realized how blessed we were.

Here is a video clip of that portion of the play along with the song. I hope you enjoy it as much as we did!

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Different, Not Less

 

“What’s wrong with your brother? Why can’t he talk?”

Ethan looked up at the little girl at the park who asked him this question and said, “There’s nothing wrong with Caleb. He CAN talk, but just not the way you and I do.  He’s different, but he’s a lot of fun and I love him just the way he is.”

When I heard the little girls question I cringed and my motherly instincts almost caused me to jump in and answer for Ethan since I thought that it might be a hard thing for an eight-year-old to explain.  I was so glad that I held back because Ethan’s answer brought tears to my eyes.  I was so proud of him for sticking up for his big brother and for helping to explain to his new friend that although Caleb is different that does not mean that there is something wrong with him. 

I led a small group last Spring for mothers of special needs children and one night we watched the HBO film “Temple Grandin” based on the true story of Temple Grandin’s life.  Temple is now an adult, but the movie covers the struggles she had growing up with Autism and how her mother fought long and hard to make sure she got the education she deserved.  I love the quote from Temple’s mother when she tells a teacher that although her daughter had Autism she didn’t want her treated as if she were stupid.  “She is different, but not less” Temple’s mother explained to the teacher.

Dwight and I have learned over the years that instead of trying to “fix” Caleb and make him conform to the world’s definition of “normal”, we need to embrace his unique personality and special gifts and meet him in his world.  We have found that by focusing on what Caleb CAN do instead of what he can’t do helps us see him as the special and amazing child that God has made him to be.

The best way we can help others to accept children with Autism is to increase awareness of what Autism is (and what it isn’t).   Each year Dwight and I go into the school and talk to Caleb’s classmates in the Fall and educate them on Autism. We talk about how Caleb is like them in many ways : He watches Spongebob Squarepants, he loves to go swimming, and  his favorite food is pizza.  Next we talk about the ways that Caleb is different and explain his sensory issues and why he sometimes gets overwhelmed when there are a lot of sounds and distractions.  We also tell them that Caleb can sometimes become frustrated when he can’t communicate and ask them how they would feel if they couldn’t tell someone when they needed a snack or wanted to watch their favorite TV show.  We explain that this frustration may cause him to cry or have other behaviors that they may not be used to.   We also teach the students ways that they can include Caleb so he feels accepted and alternative ways they can communicate with him. 

The more children (and adults) learn about Autism the more they will come to accept the differences of those with Autism and realize that they are pretty “cool kids” to hang out with.  Caleb has made some great friends at school this year and all his classmates have been so accepting.  They will give him a high-five or fist bump and even run up and say “Hi” to him when they see him at Wal-Mart, McDonald’s or the movie theatre.   Caleb’s teacher and his aides have gone above and beyond to make sure Caleb has the same opportunities to learn as any other student.

Today is World Autism Awareness Day … A day set aside for the people to learn more about Autism and what they can do to help individuals on the Autism spectrum and their families.  Take time to learn that children with Autism are not retarded or stupid. They are beautiful and smart and have so much potential!   There is no limit to the obstacles these special kids can overcome when they have teachers, peers and family members who support them , believe in them and love them just the way they are.

You can learn more about Autism and Autism Awareness Day at www.autismspeaks.org

Caleb’s Voice

Our nine year old son, Caleb, has Autism and is non-verbal.  I have to continually remind others (and even myself) that although he cannot verbally express himself that doesn’t mean he doesn’t understand what we say to him. It also doesn’t mean that there aren’t things that he WANTS to tell us.  I can’t even imagine how hard it is for him to not be able to communicate.  It must be extremely frustrating to not be able to express his wants and needs or even to just make a comment or observation about everyday things we take for granted like what we did that day or what we had for lunch.

When Caleb was around four or five we discovered that he had taught himself to read and spell and he started using magnetic letters to communicate with us.  We had tried to teach him sign language for almost a year but he showed very little interest in learning the signs. However, he has a fascination with letters and words and so he loves to use his magnetic letters to spell words. He sometimes just spells his favorite words like “editor”, “lighting”, “effects”, and “Dreamworks” (hi s favorite part of any movie is the credits, can you tell?).  Other times he spells to tell us what he wants and so he will use his letters to write words like “apple”, “cracker” or “computer”.  His fine motor skills are improving and so now he also uses a pencil and paper to write out words or phrases to communicate.

A couple of years ago we purchased an Augmentative Communication Device (ACD) for Caleb.  An ACD is like a small touch screen computer with keys that have small icons or pictures. There are different menus for things like food, clothing, holidays, school, etc. and each of them has icons of things that are in that category.  Caleb can use the keys to build sentences and then when he is done the device will read the sentence for him in a computer generated voice.  He can also go to the QWERTY keyboard pages and type whatever he wants the device to say.  This has been a great help in providing a mode of communication for Caleb and has really opened our eyes to what is going on inside his head.  We have discovered that Caleb is a very smart boy and he also has a sense of humor. He has found there is a joke page on the ACD and will often tell his therapists jokes to stall for time and avoid work.  The more we see Caleb’s personality the more we realize that he is like most nine year old boys in that he loves to play and tries to find creative ways to avoid work. 

One afternoon my husband, Dwight, was visiting a member of our congregation in the hospital and since bringing four children into the hospital would have created quite a scene I just kept them in the van with me and we drove over to McDonalds and went through the drive-thru to get a snack.  I asked the kids what they wanted.  Drew wanted a coke and fries and Emma and Ethan both decided on chocolate chip cookies and milk. I also ordered french fries and a Sprite for Caleb.  We got our food and drove off to head back over toward the hospital.  Caleb started fussing and whining and continued to let me know that something was not right. I asked him what he wanted and he just continued to kick the seat and whine.  I was driving so I couldn’t tell what was bothering him and I asked the other kids and they couldn’t tell either. I said, “Caleb, get your talker” (that’s what we call his ACD)  “Caleb use your talker to tell me what you want or what’s wrong”.  He got his talker out and then I heard it say, “I want a cheeseburger” and then he added “Please”.  “OK Caleb, we will go back and get you a cheeseburger.” I said with a smile.  After all Dwight had not texted me that he was done with the visitation and so we probably had plenty of time.  I was looking for a place to turn around and head back towards the golden arches and I guess it was taking longer than Caleb thought it should because he grabbed his talker again and I heard, “A hamburger … with cheese”.  I laughed and said, “Yes, Caleb – I know what a cheeseburger is. We are going to get you one as soon as Mommy can get turned around and back to McDonalds.”

Caleb’s ACD has been in “the shop” getting repaired so we have missed it these past two weeks and have had to try and find other ways to help Caleb communicate with us.  He does pretty well with writing so we have used a good old-fashioned pencil and paper and also the magnetic letters so he has some way to let us know what he needs or wants.  This has worked pretty well, but there are times when he decides to find other ways to communicate and they are not always very pleasant for those around him.  He has this piercing scream that he recently has become quite found of.  This scream sound is pretty irritating to listen too especially since my motherly instincts associate screaming with a child being hurt or upset.  However, the more we have charted and tried to figure out the cause of the screaming the more I think that it is not a scream that means something is wrong, but rather an expression of protest  (what the ABA therapists call “avoidance behavior”).  Instead of saying “no” when you ask him if he wants to do something or wants to eat something he lets out this piercing scream (even though he is capable of saying “no” and /or shaking his head).  He will also produce the piercing scream if you try and get him to complete a task whether it be homework, cleaning up his room or some other not-so-fun part of a nine-year-olds day.  Last week he was in his therapy session and he was doing this screaming sound.  His therapist kept asking what was wrong and couldn’t figure it out so she wrote out on a piece of paper, “What’s wrong?”  Caleb took the pencil and wrote back to her, “What’s wrong with you?”.  “What’s wrong with me is your screaming.”   she replied.  Caleb wrote “no screaming” on the paper.  “Yes, no screaming.” She agreed.  Caleb put down the pencil and the screaming stopped.

These examples have helped to show me that Caleb can engage in a conversation if given the proper tools to help him.  He learns a lot from the world around him and we have to find ways for him to express himself in order to grasp just how much he knows.  I am always thankful for the times when God helps Caleb find his voice by allowing him to discover alternative ways to communicate with us.  I especially enjoy the times when his sense of humor shines through and he makes me laugh.  One cold winter day Caleb came up to me and sat on my lap and as I grabbed him to pull him close and hug him I felt his feet and they were freezing. “Caleb!”  I said, “Your feet are so cold … they are like ice cubes. You really need to have socks on!”  Caleb scooted off my lap, took two steps back, looked at my bare feet and then looked back up at me.  He then started giggling and I could tell by the look he gave me exactly what he was thinking … Where are your socks Mom?

A few weeks ago when Caleb was in Sunday School his teacher said he took his paper and pencil and wrote,  “I love you” and handed it to his teacher. She smiled and said, “Thank you Caleb. I love you too.”  She took the pencil and wrote back, “I love you Caleb”  Caleb looked at the paper grabbed the pencil and added “Elliott” after his name.  “Yes” she laughed and added, “I love you Caleb Elliott”