The Little Boy Who Lost His Words

This is a children's story I wrote about 2 years ago. I am hoping to get it published one day. It is about the bond between a sister and a brother with special needs. Lexi doesn't realize it yet (she's only 5) but she is Robbie's biggest advocate and will continue to be as they grow up. She is the one who grabs his hand and leads him where he needs to go. She is also his voice, which can be bad as well as good. She knows her brother has Autism- but really, who cares? He's just Robbie, her brother.

                             The Adventures of Robbie and Lexi

                                  The Little boy who lost his words

Robbie was a boy who liked to talk. He would talk to his Mother, his father and little sister. He would even talk to his blanket, when no one else was around to listen. One day Robbie woke up from his nap feeling a little bit thirsty. “I would like some apple juice” he thought to himself. “I’ll go ask Mommy for some.” He came downstairs and saw Mommy in the kitchen making breakfast for his little sister, Lexi. “I want some Apple Juice please.” He tried to say. Nothing came out. He tried again. Nothing. He tried until his face got red and he got very tired. Mommy held him tight and asked what was wrong? He could not answer. He had lost his words. His sister asked “Robbie what’s wrong?” “I’ve lost my words” he tried to reply but nothing came out of his mouth. That night when Mommy tucked him into bed he could not sleep. Quietly he got out of bed. He grabbed the flashlight he always kept by his bed. At the end of the hall he saw a glimmer of light coming from the attic. “That’s strange.” he thought to himself. He got the tallest chair he could find and stood on his tippy toes to peer in the attic door. He’d never noticed it before, but there was another door. It looked old. He tried to open it, but it was locked. He peeked through the key hole and saw letters everywhere. They were on the walls and on the floor. Some were whole; others looked as if they’d been bitten in half. Then he heard loud snoring. It was a dragon the size of 100 Daddy’s. He had a bunch of letters in his arms. Robbie knew this dragon was the one who had stolen his words. He climbed out of the attic and went back to bed to think. When he woke up, he knew what had to do. Robbie had to find the key and unlock the door to the dragon’s den. Then he could get back the words that had been stolen from him. He began to look. He checked under his bed, he looked in his closet and in his drawers. No key! Just as he had finished looking, Mommy came into say good morning. “Robbie, what have you done to your room?” Mommy exclaimed. She did not look happy. “I have to find the key to the dragon’s den to get back my words” Robbie tried to say- but nothing would come out. “Do not come downstairs until your room is clean” Mommy said. Feeling frustrated Robbie cleaned his room and then went downstairs for breakfast. Mommy had made oatmeal for breakfast. Robbie didn’t feel like oatmeal. He wanted cinnamon raisin toast with butter. He tried to tell his Mommy. Again- no words would come out. He pushed the bowl of oatmeal away. It landed on the floor with a loud bang. Before Mommy could say a word Robbie ran upstairs to his room in tears. “I have to find that Key” he thought to himself. Just as he sat on his bed there was a soft knock on the door. It was his little sister. She came in, looked at him and said “where are your words? Did you lose them?” Robbie nodded. “Finally someone understands.” He thought . “I’ll help you find them.” Said his sister. Robbie nodded and they began to form a plan. That night after Mommy and Daddy had gone to sleep, Lexi quietly crept into Robbie’s room. She was wearing her favorite pink princess nightgown. It had always brought her luck. She had also brought her magic wand. This wand held magical powers and could help them fight the dragon to get back Robbie’s words. Robbie was waiting by his toy box. He also had a secret weapon-his blanket. This blanket had always kept him safe and he knew it would protect them. Robbie and Lexi began the journey into the Attic. They were scared but put on the bravest faces they had. When they came to the large door, Lexi said “I’ve got this” and pointed her wand at the rusty lock. Instantly it clicked and the door was opened. Robbie motioned for Lexi to stay behind him. First because he was bigger and second because he had his blanket in front of him. As they approached the dragon his eyes opened wide. He stood up and looked down at them, smoke coming out of nostrils. The dragon’s mouth opened. He had letters hanging from his teeth. Robbie held his blanket in front of himself and his sister. Fire roared out of the dragon’s mouth but the blanket ensured no one felt a single flame. Lexi pointed her wand at the dragon and exclaimed “Give my brother his words back, mean dragon.” Instantly all the words rose into a large pile and fell right on Robbie. At the same time the dragon began shrinking. Without the stolen words he had no power. He shrank to the size of a lizard. Robbie looked at Lexi and spoke- “Thanks Lex! Now let’s take this lizard out to the trash.” Robbie and Lexi, with the lizard in hand, left the attic and went downstairs. Quietly they opened the front door and set the lizard down on the ground. “Lizard, I hope you’ve learned your lesson. It’s not nice to take things that don’t belong to you.” Robbie said. With that they closed the door. Feeling very tired, Robbie and Lexi climbed back up the stairs and went back to their own beds. They both slept until late into the morning. The next morning Robbie and Lexi woke up feeling happy with their accomplishment. They went downstairs to see Mommy and Daddy. “Good morning Mommy, Good Morning Daddy.” Robbie said. ““Robbie, it sounds like you found your words!” said Mommy. “Look what I found this morning while I was taking out the trash” Daddy said while sitting at the table. He had a small box in front of him. “What? “both kids replied. “ A lizard. Why don’t we keep it for a pet?” Robbie and Lexi looked at each other and smiled. “No thanks” they said. “We’d rather get a dog.”

The Reason I Jump

Why? This has been an ongoing question for me concerning many of Robbie's behaviors. Why does he jump? When he saw a sticker with Chicken little on it last week , why couldn't he tell me who the character was? We've seen that movie 50 times- at least. Why will Robbie read at school but not at home? Why on Monday is much of the information that is considered "known" on Friday completely foreign? Why do movies resonate so much more than people? Why at 7 years old is the image of a guitar sometimes called a tiger? Why is Robbie "on" some days and completely "off" other? Why does Robbie run back and forth from the living room into the stairwell? Why does he throw himself onto the bed, get up and do it again, so many times I can not keep track? Why does he Jump? SO many whys? The same questions arise with behaviors. Why do some behaviors seem to begin, seemingly out of no where? Robbie gets into patterns of behaviors that are very difficult to break. For example he likes to take all pieces out of any games we have and put them in a large pile. He will take legos or blocks and shove them into his castle or batman house. If you try to move it- he gets upset. He has also begun to take everything out of his room. I came home from an outing, with Lexi two weeks ago, to find every ounce of clothing from his drawers and every object from his closet sitting in the playroom. Needless to say I was not happy. Not only because I had to clean up the mess that was made but because I remembered sitting in a seminar discussing Autism and behavior modification. There was a woman ,who I know from the sisterhood of Autism mothers, discussing how her son's bedroom had to be kept relatively bear. At night he would take everything out of his room and throw the items down the stairs. I can remember thinking- "that must suck." And here we are. The irony. Or the neurologist talking about medications for aggressive behavior and for those with Autism that are having a hard time with their disability- knowing they are different. Monday I went for a much needed run and came home to discover Robbie had hit his ABA therapist and Dad. Over the weekend he had hit me as well and has been yelling "shut up" at the top of his lungs in our ears. Monday he had a bad report from school indicating he was "talking back." Two weeks ago I said Robbie did not have aggressive behaviors. The irony. Don't misunderstand- I do not think that Robbie's behaviors are overly aggressive. I know much of the behavior is attention seeking. Robbie is testing us, as many 7 year olds do. Medication is not the answer for his behavior at this time. But, never say never I guess. (Medication for sleep is a whole different conversation.) The Reason I Jump; The Inner voice of a Thirteen Year Old Boy with Autism by Naoki Higashida with an introduction by David Mitchell is a book I have just discovered. The title and introduction drew me in immediately. David Mitchell is an author of fiction such as Cloud Atlas- made into a movie with Tom Hanks and Halle Berry. He also happens to have an autistic son. He writes of his experience getting the diagnosis. How it validates something was amiss. The sinking feeling that your life as a parent is going to be much tougher than anticipated. How so many had suggested boys are just slower than girls, so that must account for the delays. The newspaper clippings that are sent about the celebrities whose children are doing fine, how horse riding and shamans in Mongolia helped one boy, the diets, the programs that have shown success. He talks about "The books you read to learn more because up until now the closest you've come to autism is watching Rain Man or reading The Curious Incident of the Dog in the Night Time. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. Symptoms of Autism appear to be numerous. Some are recognizable in your own son, but just as many are not." Well said by David Mitchell so I had to quote him! I have begun to read the book and do find it interesting. A thirteen year old boy with Autism who uses a device and another person to help him communicate and has thoughts and feeling just as a non Autistic thirteen year old. I still have a bit more to get through and I'm sure it will spark additional blogs as my mind wanders into the world of Autism. Bottom line- it's all about ensuring a happy life for Robbie and helping him to reach his potential, whatever that may be!

And what brings you in?..........

I was supposed to go back to work 2 weeks earlier, however I took some vacation time. Most think it is because I can't bear to leave my sweet Timmy - ( maybe partly true) but really, Robbie had an appointment with a new neurologist and he had dental surgery rescheduled. The neurologist had been called in April to book an appointment. She is someone who was recommended by our Occupational therapist and is in network for us. ( A huge financial benefit.) The appointment had been moved twice and of course it was scheduled on a work day for me. The Dental surgery has been a huge headache. The dentist office has been wonderful. Our insurance company has not. They would not cover the hospital portion of the surgery- only the dental portion. Their reason- "he is not listed as Autistic, therefore it is not medically necessary." After 4 years of claiming benefits for Robbie- Occupational therapy, Speech therapy, Applied Behavior Analysis and social skills - Really???? After speaking with countless call center helpers- and getting a different response each time the dentist office finally got me in touch with a supervisor. The dentist had to submit documentation from our neurologist stating Robbie has Autism and the surgery is medically necessary. Crazy! So- this has been done and weeks later they still have not approved it. Postponed again and again. The neurologist appointment we did have. And what brings you in?- is how it always starts. I explained how we wanted to get back in network, she was recommended, and I have always felt there is something more going on with Robbie in addition to his autism. We discussed his scripting behavior- where he monologues movies until he perfects the pitch and tone of the lines he is reciting. The neurologist shared that her son has Aspergers. He thrived in his school theatre program. Not only did he know his lines, but the lines of everyone else. He could fill in for anyone and was a true asset. I got excited sharing my dream of Robbie finding a use for this incredible talent. Acting could be a way to use this skill in a constructive way! Quickly and gently - he is a different kid, she said. Not once- but twice - he is a different kid. My heart sunk, even knowing it was a stretch. At that point we began discussing the other issues that brought me in. Sleep (lack of) and Stimming. The same 2 reasons we have seen neurologists for the past 4 years. Lack of sleep has always been an issue for us. While it is better- there are still 2-3 nights a week where there is little to no sleep. Again the problem being Robbie is disruptive to the entire household ( loud, jumping, running, talking, yelling, hitting) and not safe enough to be left alone. (Locking him in his room has been suggested but we don't feel he would be safe during those episodes.) As the conversation progressed and medications were discussed I realized we have tried every class. Stimulants, Alpha Agonists, anti-anxiety, and seizure medications. The neurologist explained that only 2 medications are approved for Autism. They are used to treat aggression and irritability. These are not issues during our daily routine- at this time. She suggested a great tool kit found on the autism speaks website. It lists every medication, target behavior and side effect. ( Great source of information- www.autismspeaks.com Autism and Medication: safe and careful use tool kit) We decided to try an alpha agonist for sleep once again. We don't want to medicate our child unnecessarily. We don't want to lose him even more. However, as she stated- everyone is better off with a full night of sleep. We have a new baby, A kindergartener and we are tired. He is tired. She also touched on my notion that there may be more to Robbie than simply the Autism. The questions began- has he had blood work, seen a gastroenterologist, had an MRI, EEG- and so on. Yes, yes, yes and yes. "The spectrum is large and each child is different." The words stung a bit. My response - as always - I want to ensure Robbie is the best he can be. Her response - doesn't everyone want that for their child?.............. I like this doctor. She is " real"- and I think I am ready to hear it, maybe?

Things that make you go hmmmmm?

Every week I get emails from baby center regarding Timothy's development. Every month or so I get emails from baby center regarding my 5 year old and 7 year old respectively. Something I read in the email for a 2 month 1 week year old made me pause. It talked about overstimulation and how to tell if your newborn has had enough. In uteuro everything is quiet, muted and gentle. When they arrive - bright lights, barking dogs, phones ringing, siblings wanting to "play" etc.. can be overwhelming. Some of the signs of overstimulation are- closing eyes, turning away, tensing up, arching back, avoiding gaze and irritability. Sound familiar? These are the some of the same signs of overstimulation for bigger kids as well. We know we are living in a world of over stimulus. When we were children we were told, at times, to entertain ourselves. No computers, TV, or electronic devices of any kind. Just you and your doll or blocks etc. Today we are so busy with so many structured activities. There is little to no "down time or quiet time." My husband will attest I have fallen victim to this as well. You don't want your children to "miss out" on anything. But really - is it too much? On another note we had an exciting day yesterday. I have been talking about Halloween with the kids. Lexi picked her costume out months ago (Dorothy from the wizard of oz). For Robbie costumes have never gone over well. When he was younger I would struggle to get him wearing something- anything. This year we looked on a Halloween website and he picked out his costume. I was worried he would change his mind so we looked multiple times before I bought anything. And yes I spent way too much money on the final product- but his reaction was worth every penny. An astronaut was his costume of choice- complete with helmet. Very cool. It arrived yesterday and he put it on immediately- helmet and all. It is an itchy material, too big for him- but he loves it! Now that it was on him- getting him to take it off would be a challenge. However- after explaining he could not eat his beloved cheese balls wearing the costume, he took it off. The best part was when Dad got home from work. He pointed to the box and put the whole ensemble on. "Look at me. I'm an astronaut!" Music to our ears!!