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

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He’s My Brother

“Hurry up! We want to get good seats!”  I said as I led Emma, Ethan and Caleb into the Jr. High Building.  We were coming to watch our oldest son, Drew, play percussion in the Jr. High Band Concert.  We entered the auditorium and filed down the middle row to the first group of open seats we could find. 

I got all the kids settled in and Caleb was happily watching “Bee Movie” on his iPod while Emma and Ethan scanned the crowd looking for kids they knew from school.  “Hey, there’s Grandpa!” Emma said as my Dad walked into the auditorium and came over to join us. 

As the lights dimmed and they introduced the orchestra Caleb threw his iPod into my lap and sat forward intrigued with what was going on up on the stage. He watched and listened as the music began and then started bouncing in his seat and squealing with excitement (making what we like to call his “happy noises”). 

“Wow ! That is unusual for Caleb” I thought.  Every other time we had attended one of Drew’s band performances Caleb would just sit quietly and watch movies on his iPod not even paying attention to what was going on up on stage. Occasionally he would cover his ears if it got too loud or when the audience clapped, but other than that he seemed to be off in his own little world and totally engrossed in the movie he was watching.

Tonight was different and I’m not sure why. Caleb definitely was fascinated by the music of both the orchestra and the band and he could hardly contain his excitement as he bounced on his seat throughout the entire performance.  When each song ended he would clap along with the rest of the audience and he would crane his neck to look for his brother up on the stage. As soon as he saw Drew he would smile and clap even harder.  

What a wonderful evening!  Drew did an awesome job playing the three selections the band played and Caleb surprised us all by helping us congratulate Drew on a job well done.   I even heard Caleb softly say, “Dew” as he clapped at the end of the performance.  This simple word and the smile on his face were Caleb’s way of saying, “Yep, that’s my brother up there and I am so proud of him!”

Autism Everyday

As I was up with my son Caleb at 4:00 am this morning I found myself wondering what life would be like if we didn’t have a child with Autism. 

What would life be like without the constant worrying about him running off like he did last summer? (missing for 30 minutes that felt like 30 hours)

What would life be like without the meltdowns and the judgement from onlookers who don’t understand Autism and think that I just need to “learn to control” my child?

What would life be like if Caleb could talk and communicate? If he could make friends and tell me about his day at school?

What would life be like without the fear that Caleb may never graduate … that he may never get married … that he may never be able to even live on his own?

I found this video by Autism Speaks on YouTube. Autism Speaks is a great organization doing wonderful things to help brighten the future for children with Autism and their families. It made me cry to listen to these mothers because it is true …. Autism is there EVERYDAY. It’s a part of your life and it can consume all your time, money and energy.

On days like today it helps me to think about the positive things that are going on it Caleb’s life. The gains and progress he has made in the last month or the past year help me see that there is hope and that I need to keep going and not ever give up! 

Last week Caleb introduced himself to a classmate. This may not sound like much, but for a child like Caleb it is HUGE. Caleb pointed to his classmates name plate on her desk and kept running his fingers over her name and looking up at her until she said her name, “Jacee. My name is Jacee”. She smiled at Caleb and then he put his on his chest and said, “Caub” and did this until Jacee said HIS name. “Caleb” she said and then he got excited and smiled back at her. 

Yes, God is doing great things in Caleb’s life and will never give up on his potential and all the great things he has planned for his future. Neither will I!

Froggy’s Great Escape

I was lying on a beach enjoying the warm sunshine and the feeling of sand between my toes.  I could hear the waves crashing on the shore.  The sun was shining brightly and there was a light breeze blowing across my body.   I heard a loud crash and then a huge splash of water and was jolted out of dreamland and into reality-land.  Talk about a rude awakening!  I realized that the crash and splash were “real” and that they came from downstairs. I could also hear Caleb squealing and laughing with delight. 

What was that?  It sounded like an awful lot of water or some sort of liquid … what has Caleb gotten into this time?   Caleb is a pro at destruction and loves to see what happens when he throws things up in the air and lets them fall (or crash) to the ground.  My mind was racing with all the possible things that could have created these sounds as I ran down the stairs to find Caleb jumping up and down with excitement. He looked at me and stopped and then looked over at the kitchen sink. I walked over to the sink to find our pet frog, Froggy, had been “set free”.

Froggy has been in our family since last February.  He is one of those itty bitty frogs you may have seen at the Hallmark store that come in a little glass cube filled with water and a little bit of aquarium rock in the bottom.  This is not the first time Caleb has tried to help Froggy escape … there have been multiple other attempts to help Froggy gain his freedom, but none that had ended as badly as this time.   This plan of escape involved Caleb tipping Froggy’s glass cube over into the kitchen sink and unfortunately  when all the water went down the drain so did Froggy.  I looked down and could see Froggy frantically jumping around in the garbage disposal.

“Caleb!” I yelled. “What did you do that for?  Why did you knock over the frog?”  Obviously Caleb didn’t answer but neither do my three other children half the time (especially if they are afraid the answer will just get them into more trouble).  Caleb was still smiling and seemed to find the whole ordeal quite entertaining.  I reached down and saved Froggy from the garbage disposal and put him back into his cage.   I added clean water and tried to get most of the aquarium rock out of the garbage disposal so that it wouldn’t ruin it next time I turned it on.

Emma came downstairs later and said, “Oh, you cleaned Froggy’s cage!”  She had been asking me to clean it for several weeks and seemed happy that I finally got around to doing it.  I laughed and said, “Yes, I did clean his cage, but only because Caleb about killed the poor little Froggy when he dumped him into the garbage disposal!”  Emma was relieved that Froggy was OK and she made sure to give him a few extra pieces of frog food to help Froggy deal with the stress and trauma caused by all the excitement of the morning.   

Why did Caleb tip over the cage and set Froggy free? 

Did he hear Emma and I talking earlier in the week about Froggy’s cage needing to be clean and think he could help? 

Did he just want to see what would happen if he tipped over the cube filled with water? 

Was he trying to get Froggy out to play? 

I am not sure why he did it but I was relieved to find out that the majority of the water went into the sink and not on the floor. I was also thankful that it was water and not something sticky like Sprite that had been spilled.

Another plus :  Caleb did not turn the garbage disposal ON!  (Wow – that would have been messy!)

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”

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