A Book in Progress

Preface:

 I started writing this a few weeks ago. I am not sure where I was headed, other than I have this continuous thought, that no matter how I plan, how many questions I ask, I will truly never know what the future holds for our family. I will never know what the future holds for any of my sons... They will learn, grow, and make decisions that will guide them towards their future, and I am here as a support, as a mentor, I am here to instill the values, beliefs and morals that are important to me, but just as I have done, as I have grown older, their beliefs will become individualized to fit their needs. We crave to know our children will be contributing members of the community, but to know, is different than to hope. To want is different than to be, and only time will tell what the future holds. 

I have spent so much time with this internal battle - praying to know what will happen, and allowing myself to live in the moment and do my best to guide the best possible outcome. For reasons beyond my understanding, I worry about C much more than my other 2 children. I know A and O will have bright futures, though I don't know what that really means, but with C, it seems blurry. I struggle allowing myself to believe in a future that I don't yet understand. I worry that by believing, I may become complacent, allowing something to slip through my fingers. By hyper-focusing on the future, I fail to look at the amazing and everyday accomplishments taking place right before my eyes, and with all of my children. 

So in summary, I like the turn this piece took. I like the reminder that we all have a book in progress, and it is up to us to update the pages, ensuring the outcome we desire. We pass the book onto our children to write on their own, as they take the reigns of decision making, and as we pass the torch, we embark on our own new chapter. 

Sometimes we just need to be able to say what we are thinking, out loud, with someone listening. Someone who won't judge, someone who understands, someone, who though may be on a different journey, may also be traveling on a parallel path.

Telling our story brings me peace, gives me hope that by telling our story we will give others the same confidence, the same ability to share. Sometimes healing lies in hearing words hard to say, and spoken out loud. Sometimes joy is found in moments that seemed inconsequential, but meaningful none the less. Sometimes not speaking, but listening to others stories gives a sense of relief, that you truly are not alone.

Our story will continue, there is no end, the book will continue to be written, and the plot will constantly change. We continue to work hard to better ourselves, our family and help those around us understand how our story is just the same, and yet different from theirs. No one comes with their story written from start to finish. We choose different paths, leading us to different destinations, and while on our journey, we change the setting, the details, and the content of where and why our story takes place.

We sometimes try to jump ahead, to get a sneak peak at what the outcome may be, we plead to know the ending. We ask those around us, to give us a glimpse of the end destination of the characters headlining the show, but as we know, there is no definitive outcome. As the story takes place, the end is constantly changing, shifting. What may be the end today, will surely be different tomorrow.

And so we share, as we experience, we hope that as we share, we help to guide the outcome for not just ourselves, but those around us. And just like any good book, the end will provide us yearning for more, wanting to savor each and every detail, and a desire to relive the past chapters, have one last visit with the characters we grew to love.

Time to Retrain Mama

When to stop caving in, just because a verbal request was made?

It was a tough night last night. The hubby is away at camp with our 6th grader for the week, and while I know he has his hands full with 9 6th grade boys, after last night, I would gladly switch places.

Bedtime routine is important to C. He likes to be warned well in advance that bedtime is approaching. He still doesn't understand the concept of time, so minutes, hours, days have little meaning, but the ritual of constant reminders makes it easier for all of us, when the time comes to head to his bedroom and read his book, tuck him in, and close the gate.

Last night, as I was issuing his many warnings, C kept traveling from the playroom to his bedroom, from the living room to his bedroom, and from his bedroom back to the playroom. I was cleaning up dishes from dinner, and knew that he was still playing with all his "friends", but wasn't aware of exactly what he was doing.

When I finally issued the last warning, and we walked hand in hand upstairs to his room, I found a full scene straight from both Toy Story and Monsters U waiting for us. I reminded C that our toys also needed to get sleep and that we needed to pick them up and put them "night-night". C became angry and frustrated, and threw his toys out of his room into the hallway. I gratefully took this opportunity to place them back in their respective bins, walked back to C's room, and closed the gate. I grabbed the book he had chosen, but he was aware. He knew that I put his toys away. He immediately began pleading, "Please, pretty, pretty please, can I have my toys back?".

It is heartbreaking. We work so hard to get our children to communicate, so when they do, we immediately comply with their request. Especially when verbalization is new, and it feels appropriate to give what has been asked for verbally as a reward. We fought for so long to understand C's needs and wants, and were happy to give what was asked for, it can be as rewarding for us, as it is C. Cookies for breakfast? Well you used the word cookie, said please, and are so proud that you were able to ask, how could I say no. You want to watch Toy Story for the third time in a row? Well you brought the movie to me and asked to watch it, how could I say no. I have trained my child to get what he wants, if he makes a verbal request. Now, I have to retrain my child, and hope that he understands what a reasonable request is, and can understand that it is my job to set limitations. That is a tall order.

I know C understands much more than he can communicate. I know that I don't acknowledge his level of comprehension, because I just simply don't know when he understands, but is choosing to ignore, or what he doesn't understand and therefore ignores. In addition, he is a master manipulator (said in the most loving way, you have to understand and comprehend, in order to manipulate a situation or person, so I am somewhat grateful for this acquired skill). His sweet voice, his long eyelashes, his innocent pleads, make it so difficult to say "no". Not only do I have to retrain C, but I need to retrain myself, his daddy, and his siblings. Every meltdown can't result in him getting what he wants. He needs to have expectations similar to his brothers, placed on him. We can't encourage the less than desirable behavior because we want the crocodile tears to stop. We can't let his sweet plead, "PRETTY, PRETTY, PRETTY PLEASE" change our decision.

Last night was a hard lesson learned by both mama and boy. I had to walk away, let him cry it out, and cry he did. He screamed, he stomped his feet, he banged on the gate. Tears flowed freely, there were moments of sweet pleads, and moments of glass shattering screeches. Our neighbors, I am sure, could hear the chaos, and had thoughts of calling 911 or child services. The tears and cries lasted for about 15 minutes. I tell you, it felt like hours. At times I felt like crying right along with him, and there were times I found myself giggling at his version of compromise. And then there was silence. After O and I finished our book (despite the mayhem in the room next door) I peeked in C's room. He had swaddled himself in his comforter, and fallen to sleep. There were residual hiccups from his tantrum visible, as I watched the rise and fall of his chest, while he slept. 

Special Needs - In Reverse?

Can Special Needs Also Encompass Gifted and Talented?

Special needs, to me, specifically in the school, has many meanings, beyond the traditional. This month we have been assessing O, but rather for Special Needs in the traditional way, his needs are unlike those I typically write about.

O is gifted. I know we all feel our children are gifted and talented in their unique way, but he is gifted academically. At two he knew all of his letters, was able to put together 25 piece puzzles, and was beginning to recognize sight words. He fought hard to keep up with his brother that is four years older. He was potty trained in 24 hours. Give the boy a challenge, and his competitive nature takes over, and he does everything in his power to succeed.

By three he was reading independently. His favorite book... a dictionary. he wanted desperately to understand the words that grown ups around him were saying. He made it through the Children's Dictionary in a week, and quickly moved on to the Webster Edition.

A was in 1st grade, and O was enthralled with his homework assignments. He wanted homework too, so we purchased Pre-School Workbooks to encourage his love of learning. We quickly realized that he had mastered the skills presented in his age appropriate workbook, and moved on to the Kindergarten Lessons.

By 4, he was able to write all of his letters, his name, and he had basic addition and subtraction facts memorized. You could see the wheels in his brain turning, as he was determined to solve problems in his head, without the help of his fingers and toes. He was far beyond his Pre-K peers, and his teachers also embraced his love of learning, by trying to take the lessons they had prepared for the class, and altering them to accommodate his need for a challenge.

By Kindergarten O was reading the same books as A, desperate still, to stay on pace with his 5th grade brother. He would complete his Kindergarten homework assignments, and move next to A to review math facts along side his brother. It became a game... could we challenge O, and stump him once and for all? He learned the terms multiplication and division, and quickly was able to process those facts in his head. We broke the terms down... 4 times 5 means 4 added 5 times over... and he would count out loud, "4, 8, 12, 16, 20!!!". It seemed there was no problem too large for our boy to solve, and he loved it. We would go around the dinner table trying to stump him, and rather than become frustrated when the answer was wrong, he would ask how to solve it correctly.

During our last Parent Teacher Conference of his Kindergarten year, we asked the teacher what we could do over the summer to foster his love of learning, and ensure that he didn't loose his enthusiasm, his desire for a challenge, without burning him out. It became clear that we worked so diligently on math facts, that his writing and comprehension skills had plateaued. He was now right on track with his peers, rather than ahead.

We created a reward system. We encouraged our boys to choose books from the library, and then they were to write a journal entry on what they read, or even what they experienced during the day. For every page they logged in their journal, they received an hour of electronic time. They could bank their hours, to redeem all at once, or they could use them as they earned them. We did this for the entire summer, and the end result, for both A and O, was what we hoped... Both boys are off the charts in Reading Comprehension and Language Arts.

As the year has progressed, the gap for O has increased. He finishes his work ahead of his peers, he reads his assignment, and then pulls out his novel while the others continue their work. His teachers have provided as many opportunities as they have been able, to continue to challenge him, but with a class of 24 students, it is hard to teach to just one. We continue to work at home, challenging him with math facts, letting him check out books from the library that are intended for an older audience, and he continues to lurch ahead.

SO... we requested an assessment for Advancement. The request and subsequent meeting is as arduous as a request for an IEP. As a matter of fact, the meeting to review the assessment was very similar to our request for an IEP. Many of the same players sit at the table, but rather than Special Educators, you have Specialists, reading and math. The process is much the same, testing upon testing, IQ tests, and ending with a thorough psychological evaluation.

Special Needs indeed. O is in need of an academic environment that continues to challenge him, fosters his desire to learn, and is executed with his specific needs in mind.

We focus our efforts on our children with special needs, and advocate for their best educational environment. We need to do the same for our gifted children, who are special in their own and unique way. While I understand that there are literally thousands of children our school system has in their care, we, as parents, need to ensure that our children are getting the educational services they are entitled to. Just as I feel when walking into an IEP meeting - "Am I asking too much", "What accommodation can C live without, and what is essential to his continued academic growth" - I found myself asking, when walking into O's meeting. I had the same anxiety, the same reservations, "How special is my child, really?", "Is he really so outside the box, that he simply cannot make his way back in?", "At what point am I asking too much, and what determines how much is just right, and I can't fail my child by asking for too little". It is daunting, but as I have learned, I am my child's best advocate, and so fight I will, for what I believe will provide the best academic outcome for O.

IF AT FIRST YOU DON'T SUCCEED, TRY, TRY AGAIN

We don't know how resilient our children are, until we give them an opportunity to show us. Yesterday C had a dentist appointment. Two weeks ago he watched a cartoon that showed the main character visiting the dentist and losing a tooth. The Tooth Fairy visited the character (I can't remember which cartoon it was, but I think it was on Disney Jr.), and from that day on, C asked daily to visit the Dentist and have the Tooth Fairy visit. Of course he asked in his own way, "We have to go to the Dentist today, I have a loose tooth and the Tooth Fairy needs to come."

Many of us have anxiety visiting the dentist, and because of our anxiety, I think we tend to pass the fear on to our children. Add in a cognitive, developmental, sensory or attention issue, and there is a potential for disaster. When I made the appointment, I made sure that the team at the office had updated their files to show C has Autism. I didn't realize that I was nervous, until C got into the chair. C however, had no anxiety. He climbed right into the chair, looked the Dentist in the eye, and smiled.

C with Dr. Katz

Our visit was perfect. C was uncomfortable with the buzzing contraption they use to clean teeth, squirming, but not complaining. He didn't bite, didn't yell out, and remained in the chair. He had no cavities, no loose teeth, and his oral hygiene is top notch, according to the Dentist.

After the clean bill of health, the Dentist, Dr. Katz, looked me in the eye, and said, "C did amazing!". My eyes welled with tears, and I let go of the breath, I didn't even know I was holding. Trained at Kennedy Krieger, Dr. Katz has a complete understanding and acceptance of our children's needs. He was patient, accommodating, and was able to work quickly and efficiently.

Having a dentist that is calm, while working on our children, and in addition, understands our children's needs, on a level greater than the average, proved to be a key component to our successful visit. Putting my mama fear to the side, and acting as if a visit to the dentist was as common as a day in the park,  ensured C had no anxiety.

I know that I sometimes cancel plans, don't attend functions or parties, and plan our family activities around C's past successes. What I tend to forget is that I will not know how C will react to a situation, unless I put him in that situation. C's success is based on the experience I allow him to have. If we keep him contained in the safe bubble of our home, how will he ever learn to navigate the world around him successfully? My fear cannot hold him back. My sensitivity to others response to his Autism, is my own issue, not his. What I forget is that the community around us is learning, becoming aware, more accepting of his needs and response to his environment. If I encounter someone less understanding, it is my responsibility to try to educate and encourage acceptance.

There will be failures, I will attempt activities that just won't work with his needs, but I have to try. And if I encourage C to try, and try again, maybe he will learn to tolerate activities that we never thought possible. If we, as a family, surround C with guidance and support, and contain our own aversion and fear, if we try, maybe those activities we thought were going to be failed attempts will be successful and natural, just as a trip to the dentist turned out to be.

For more information about Dr. Katz practice: Katz For Kids

Enough of the Sleepless Nights, Already

C sitting on the couch after another restless night

Autism, Apnea, or Meds... Oh my

C had a doctor's appointment Friday. He has never slept well. We spend our nights waking in the middle of the night, questioning whether we should try to coerce him back to sleep, or let him figure it out on his own. Then we spend the rest of the night angry at ourselves for the decision we made.
Engaging C, in the middle of the night makes him think that it is indeed morning time. Time to gather his "friends" head downstairs, watch a cartoon, and eat breakfast. Going back to bed is simply not an option.
To leave him alone, means spending the evening with one eye open, one ear diligently waiting for his voice to come barreling down the stairs, or worse even, the dreaded silence.

I know that many children with Autism have difficulty differentiating between night and day. I have heard stories of children waking up in the middle of the night, just like C, and feel as though because they are awake, it must mean the start to a new day. I have heard that sometimes seizure activity can cause sleeplessness, sleep apnea could be another cause, lower melatonin levels... There are an abundance of reasons, but what do you do when your child doesn't have the means to explain to you why they are so restless?

So we are on the hunt for a full night's sleep. A was not a good sleeper, and had terrible asthma. We spent his first 4 years of life waking in the middle of the night to administer albuterol  treatments. Then we had O, who didn't sleep through the night until he was three, but in the meantime, we had C when O turned 2... leaving us sleepless for the last 11 years. We are exhausted, we survive on caffeine, and we are ready to turn this corner in our life.

When you have a child with special needs, it seems as though your days become consumed with research, hypotheses, and in turn, the commitment to prove the theory. In our case, the theory becomes harder to prove, as we are searching through an abundance of information, seemingly because everyone is looking for answers to the rise in Autism, leaving many contradicting research options, and we have a child who has words, but rarely gives us insight into his sweet little brain. We have to rely on our past theory failures to guide us toward our new theories.

When we first received the diagnosis, it seemed that every day we had an appointment with this specialist or that. We learned a lot about Autism in general, but had very few immediate and insightful findings specific to C. Our greatest accomplishment in all of the pricks, prods, and heartbreaking exams, assessments and tests, was finding that C has a wheat and egg intolerance. We, in a way, lost hope in finding answers and decided to focus on bettering C's life, short and long term.

Now we need answers. We are revisiting all of the specialists, re-administering many of the tests, and praying that rather than getting the generic and not useful answer of "it is because of his Autism..." we receive, here is the problem, and here is a potential solution.

We have felt that medication, unless C is unable to function without it, and unless we have exhausted all other options, is not something we want to pursue. Even though it has been 2 1/2 years since the diagnosis, we feel we are still new to... well everything. C is making incredible progress. He has made friends in school, has gone from one word demands, to 2 and 3 sentence phrases, that are relevant to what is going on around him. He is academically on par with his peers (though his fine and gross motor skills are still about a year behind), and he is happy. Medication, right now, seems to be something we should continue to push to the side... BUT, then there is the matter of sleepless nights, leading us to restless days, and then a greater potential for meltdowns, obstinate behavior, and further difficulty leading him back on track.

SO... back to the doctor's we go, starting with another visit to the ENT. We are going to check his adenoids to ensure that they are not enlarged, leading to sleep apnea. We are going to have his hearing checked again (purely out of my curiosity... We had it tested before, but because he was non-verbal it was rather difficult to get an accurate reading), we are going to research his lack of smell (the child has never indicated a foul or good scent, weird right?), and we are going to see if his sinuses are enlarged.

If we have no answers that make sense for his restless nights from the ENT, then we will move on to a Behavioral Pediatrician. This is where we may receive the "it is because of his Autism" answer. The pediatrician alluded to his slew of vocabulary, relevant or irrelevant, and his need to vocalize it. If he is unable to stop his brain from telling his voice to speak during the day, perhaps his brain is in overdrive at night as well. Perhaps he needs a means to help his brain settle so that he can rest peacefully at night.

We are hoping for answers from the ENT. For once, we would like a cut and dry answer and "fix". In the meantime, if you happen to be up between 2 and 3am, think of us, as we are up as well.

Let's Stop Using Fear as a Means of Awareness

To envision a world without Autism, is to envision a world without my son. I posted this article on my personal Facebook wall yesterday, and it drummed up a bit of discussion on eugenics, and Autism Speaks, and even a bit of politics. Obviously I posted the article on my personal wall, because I felt that my opinion is mine, not reflective of our Foundation as a whole, however I feel that there is merit to discussing it in a larger forum.


I also want to mention that I personally feel that using fear as a tactic to solicit support, funds, and/ or followers is the wrong tactic to use. Are the number of children being diagnosed with Autism increasing - yes. This isn't a reason to scare society into action. The numbers speak for themselves. We have to take action, and support families who care for those with Autism, we need to support families faced with any diagnosis. It can be lonely, and to use fear as a method of soliciting support leaves many feeling as though they need fixing. It feels dirty. Let's provide education behind the numbers. Let's truly make a case for what having Autism means, and let's be real about what it means for future generations. Let fear be an emotion that one chooses on their own, without being provoked into the emotion. I was scared of Autism, at first. I am not scared anymore. I choose to feel hope, I choose to look towards obtainable goals that will help my child succeed. There are moments of fear, but it is fear of the unknown... not of the diagnosis.

I truly believe Autism Speaks has desire to help families impacted by Autism. As stated on their website, they are "dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families." Their first priority is to research causes, prevention, treatments and a cure, and their secondary goal, and I assume, as a supplement to their first priority, is to increase awareness and advocate. While I want the future, and unborn generations to have an answer to what causes Autism, how to educate expectant parents on the causes and preventative measures to take for their unborn fetus, I can't help but to feel that there is a greater mission that is missing. Whether a part of Autism Speaks fundamental mission statement or not, there is more work to be done. By not addressing this missing link, I think that it leaves those affected currently by Autism feeling skeptical.

Currently 1 in 68 are diagnosed with Autism. As I stated before, the numbers are derived from statistics of children born prior to 2003.  Of those children, how are we, as a Country, going to help the caregivers and children prepare for their future? How are we, as a Country, going to prepare our greater population, for adults that are going to need additional help, accommodations, acceptance, awareness and support? I think what is missing from the Autism Speaks mission, that so many, including those with Autism want addressed, is help that is needed for those with Autism, now.

I don't want to cure my son, I want to help my son fit into a world that is circular, when his genetic make-up is square. I want for therapies and treatments to be accessible to our family, without fear of having to put a second mortgage on our home to pay for them. I want the world to understand my son, and accept him. You don't have to like him, you don't have to understand him, and you certainly don't have to pity him, just accept him for who he is, as you would require those around you to grant you the same respect.

I think that unfortunately, in raising awareness, and fighting for our loved one's, we choose words, and target individuals or organizations, that are controversial. We choose to use fear as our tactic. We say, let's cure these individuals, let's prevent this from happening to future generations, and it leaves those affected feeling as if they are second class. As if they are in a world where they don't truly belong, and are simply made to feel as something that everyone should be aware of, and not necessarily accepted.

I choose to believe that Autism Speaks is here to provide valuable resources to parents who are just diagnosed. They have wonderful toolkits, available for free, for any family member trying to understand Autism. I believe that they are here, to provide funds to researchers, in hopes of finding out why these numbers continue to increase exponentially, and how we can prevent further rise. 

I believe that is up to us - caregivers, family members, self-advocates, friends - to ensure that those who are living with Autism today, get the care, respect and inclusiveness they deserve, just as any other member of the human race deserves. We need to ensure that we promote acceptance and awareness, educate our community on the difference, and promote inclusive environments. We don't need to "Light it up Blue" to do that. We need to get out, we need to share our story. We need to promote self-advocacy, and most importantly, we need to listen. We need to ensure that our loved one's with Autism not only have a voice, but that their voice matters. 

I love that we live in a Country that supports our freedom of speech, that we are able to choose our beliefs. It is a right and a privilege. Let's ensure that we extend those same rights to those with disabilities.

 "Just because I can't speak, doesn't mean I have nothing to say."

Have a Stimmer?

Self Stimulating Behaviors

What are they, what can I do? 

C is sensory seeking. He loves running his fingers through my hair, the dog's hair, and twirling his own hair is a tell tail sign that he is tired. While no one has directly told us that C has SPD (Sensory Processing Disorder), I think at this point, it is a fair assumption to believe that he does.

Some common characteristics of a child exhibiting SPD:

People suffering from over-responsivity might:

• Dislike textures in fabrics, foods, grooming products or other materials found in daily living, to which most people would not react. This dislike interferes with normal function, for instance a child who refuses to wear socks or an adult who is so "picky" they can't go to restaurants with friends.
• Get so car sick they refuse to be in a moving vehicle.
• Refuse to kiss or hug, not because they don't like the person, but because the sensation of skin contact can be very negative.
• Feel seriously discomforted, sick or threatened by normal sounds, lights, movements, smells, tastes, or even inner sensations such as heartbeat.

People suffering from under-responsivity might:

• Fidget excessively
• Seek or make loud, disturbing noises
• Suck on or bite clothing, fingers, pencils, etc.

**From Wikipedia


C exhibits mostly over - responsivity symptoms. He frequently will wrap himself around my leg, throw the covers over top of himself, and roll up like a sausage, and is known to squeal when he is happy or excited. 

What we have learned, through Occupational Therapy and Sensory Integration Therapy, is that children will use sensory seeking behaviors to help them better understand their surroundings and how their body fits within those surroundings. It is self soothing, and incorporates one of the fives senses. 

• Visual  staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping
• Auditory  tapping ears, snapping fingers, making vocal sounds
• Tactile  rubbing the skin with one's hands or with another object, scratching
• Vestibular  rocking front to back, rocking side-to-side
• Taste  placing body parts or objects in one's mouth, licking objects
• Smell  smelling objects, sniffing people

 **From the Autism Research Institute

Take, for example, a child who rocks back and forth. Though the behavior is a-typical, it is giving them feedback, allowing them to realize how their body fits within a certain setting. This is considered a "self-stimulating" behavior, or stimming. While it is providing self soothing benefits, research shows that stimming also decreases one's attention to task, correlating with the ability to learn new information. Many professionals in the field advise parents to monitor stimming behaviors and limit them, by giving new behaviors or coping mechanisms to enable the child to attend to a task, and feel comfortable in their environment. 

C has a variety of stims, from tapping his foot, to flapping his hand, he squeals loudly, and will rub his hands over his pants repeatedly. We have tested quite a few strategies to help him cope, specifically in school, but also in the home. We can tell what strategy we need to use, based on the stim. 

 











For instance, C will run his fingers through my hair. While most times I enjoy it, it also handicaps me from doing anything else. We know that his seeking textile feedback, and have made a rice bin filled with scoops and bowls for him to play with instead. This serves two purposes, it allows me to be a little more free, and allows C to practice fine motor skills, while getting the feedback he is craving. 

C will also, as I stated above, wrap his legs around me, or swaddle himself in blankets. We have a weighted blanket, which provides the pressure (evenly) that he is craving. In school, they have taken this strategy, and have replaced it with a weighted vest, which allows C to walk freely, while still getting the feedback he needs. We have noticed, that when used in school, it helps him attend better to tasks or activities.

We are still working on strategies to use for the squealing. He is high pitched an LOUD! I have heard that chewing gum helps, but I have been hesitant to give it to him, for fear that he may choke. 

We noticed that prior to our understanding of SPD, C was unbalanced, had a toddler gait, could not jump, and did not run with a straight gait. After 2 years of therapies, he is like a new child. He fine motor skills have improved, he is able to jump, and his language even blossomed. 

Many consider OT, or SI (Sensory Integration) for children who lack coordination or fine motor skills, however there are a great many other benefits. We tend to overlook a lot of behaviors that accompany our children, simply because it may be a symptom of the diagnosis. There are strategies to help our children overcome many of the self-stimulating behaviors. While I personally feel that there is a time and place where stimming is appropriate, I also understand that like everything else, it must be done in a structured and strategic manner. 

For more information on Sensory Integration:
Sensory Integration Therapy

  

Carly's Voice - A True Advocate for Autism Awareness

A must read for those trying to better understand Autism

In just 3 days I read Carly's Voice, Breaking Through Autism. I had prepared this wonderful piece introducing you to Sensory Integration, and C's experience with SI and OT, but after reading this book, I have to reconsider what I wrote.

Written primarily by Arthur Fleishmann, this book honestly and clearly paints the picture of a family raising a child with an Autism Spectrum Disorder. I laughed, I cried, I celebrated, and I marveled at this family's perseverance, but most importantly, I marveled at Carly's perseverance, at her will to want more, and her ability to use her voice, even when her traditional  voice failed her.

As I read, I found myself replacing Arthur and Tammy's anecdotes of daily life, of internal struggle, guilt, and happiness with our own stories of daily life. C rarely sleeps through the night. There was a period of time where we woke with him several times in the darkness of night, cleaning the havoc he created in his bedroom. He would tear his bed apart, throw all of the clothes out of the dresser, all of the toys out of the toy box and squeal so loudly, there was no choice but to wake. He was a midnight terror. We hadn't slept in years and we began to resent it, resent the witching hour, resent each other for not getting up first. After a consult with a Behavioral Psychologist, we stripped his room of just about everything personal. I joke that it looks more like a closet than a bedroom. It works. " 'Carly, get back in bed', I told her, a bit roughly. Although she complied, I knew this was the beginning of the day, not the end of a momentary disruption of the night." Arthur Fleishmann

Though Carly is non-verbal, her Autism symptoms so greatly resemble much of C's behavior (just a bit more extreme), I have found myself questioning everything I have read, everything I was told by doctors. Verbal Stim, or "Audio Filtering" as Carly describes it. Stimming behavior or OCD? Self Injurious behavior or a tactic to stop one's self from a worse behavior?

I have spent the last year chastising myself for not allowing C to be more independent, challenge him more in the area of self-help, push his educational limitations. It is frustrating, for him, for me, for our family. I find my patience wearing thin, never with C, but my poor, older boys definitely bear the brunt of my depleted patience. Is C being stubborn, is Autism creating a barrier, should I push, is it too much, how much is really too much?

After reading this book, specifically the last chapter, where Carly has the ability to really tell what Autism feels like to her, how aware she really is, her ability to persuade, all from her perspective, I feel like I have been given the key to the chest of hope. I know that C is intelligent, more so than many of us give him credit for. Does he play me for a fool, like Carly, is he able to manipulate ? Manipulation requires a multitude of high executive functioning abilities. I think I am not giving him credit for the little man that he really is. When he refuses to comply with a request, is he really just being defiant? Is Autism blocking his ability to filter the request into meaningful (to him) words?

Very often my husband and I say "if we could just help his brain figure out how to get from point A to point B, without interference, on the path of least resistance, maybe it would all just... click. " 'I feel like there's a button in her brain we just need to switch on,' Tammy said. But that button would remain out of sight, out of reach...it was time to stop asking why, and start asking now what?" And how often do I remind myself that the "why" won't help solve the immediate need of "now". That in order to understand the greater picture, I have to focus on what works now, and how that can help us in the future.

This book has resonated with me. I found myself dreaming of conversations I would have with Carly, if given the opportunity. I want to know how to best help my child, but I want to know from his perspective. I can see the questioning look in his eyes, when he tries to tell us something that we simply cannot comprehend, and rather than disassemble the pieces of the puzzle, mostly in an effort to be efficient, we just smile and nod. How frustrating for him to know that we just don't get it, and be unable to figure out how to speak to us, in our world, when he comprehends on a greater platform what is happening in his world. How frustrating for us, to want to help, and feel so hopeless in the endeavor.

It breaks my heart that Carly expresses the need to fit in, the want to "behave normally", and being in a body that just won't cooperate with those desires. The inability to be able to communicate in a traditional way gave the appearance that she cognitively was incapable of taking in and processing information in a useful way. Despite the doctor and psychologists low expectations, Tammy and Arthur fought, for every opportunity, every hope, every dream that they had for their daughter, and look at her now. A true self - advocate, speaking for those who have been unable to release their "inner voice".

On the day when we are to "Light it up Blue", to show our support and raise awareness for Autism, I find myself taking my own introspective look at how I advocate for my son's needs, how I educate those around me, and how I do my part in raising awareness. I have a new hero, and her name is Carly Fleishmann. I have a new perspective on life with Autism, and I have a new resolve to ensure that I show my deep respect for C's abilities and achievements, that I continue to embrace his independence and that I take each day in stride. I know how hard he is trying, just by the strides he has made over the last year. I, like Tammy and Arthur will continue to fight for what C needs, and I will ensure that his "inner voice" is heard.


For more exerpts from Carly's Voice:
Carly's Voice, Breaking Through Autism

For more information on Carly visit her You Tube Page:
Carly Fleishmann's You Tube Channel

Like Carly on Facebook:
Carly's Facebook Page