Autism Awareness Month

Why we need so much more than awareness

This morning, as part of our Autism Awareness Month Household Initiative, I asked A and O "What does Autism mean to you?"

A answered, "Autism means being unique."
O had a more difficult time. He first said "Autism is a brain disorder", which in simple terms is accurate. Then he said, "Well Autism can be annoying".
A truthful response and there are times where I couldn't agree more, so I prompted him for more information.
"Well", he said, "sometimes I don't want to do what C wants to do, but he won't stop talking about what he wants to do".
To which I responded, "That sounds like C just being a little brother... don't you do the same to A?"
Then he said, "Well, it's annoying because he wakes up really early and wakes me up".
"Hmmm, sounds like that is just part of who he is, not his Autism".
"I like playing with C -  and he is funny".
Again, I said "Sounds like that is his personality. You know O, it sounds like you've got it all right, and I am proud of you".
O, of course looked at me like I had 10 heads. He thought he failed miserably, but the reality is, everything he listed wasn't about Autism. It was all about C, and who C is - Not how Autism defines him. 

I think those of us who know Autism first hand also know that it is not just awareness that we are looking for, we want acceptance, we want understanding, we want the stereotypes to end. Autism is not the same for everyone. It is a Spectrum Disorder, it doesn't have a defining "look", it comes in all ages, shapes and sizes. It affects each person differently. C speaks, he smiles, he laughs, he tells jokes. His jerky movements and flapping hands indicate his happiness. His persistence is admirable, his opinion is always known. Some of these traits are not Autism at all, in fact they are more likely just part of his personality. His Autism isn't his defining trait, it is just a trait, like brown eyes, brown hair, long legs, and eyelashes that reach to the tops of his eyebrows.

This month is not just about "lighting it up blue", it is not just about spreading awareness, it is about acknowledging that people with Autism are just that - PEOPLE with Autism. They deserve the same respect, same dignity, same opportunity as you. I ask that during the month of April, you seek an opportunity to change your point of view, and try to understand Autism, from the perspective of someone with Autism. There are so many books, blogs, and articles highlighting these amazing self advocates, and I promise you - it is life altering. Here is a list of some of my favorites:
Carly's Voice
The Reason I Jump
Anything by John Elder Robison
10 Things Every Child with Autism Wishes You Knew
The Out of Sync Child
Anything by Temple Grandin


We have termed those without Autism as NeuroTypicals... we all have labels. Black, White, Hispanic, Teacher, Student, Wife, Mother, Husband, Brother - but none of those are what define us - they are just adjectives, and when we put all of our adjectives together, we hope that we can encompass the person we are striving to be. Why isn't this what we do for our friends with Autism? Why must that one thing define them? Why must it have a negative connotation? I think that most with Autism feel that they wouldn't be themselves without Autism as one of their descriptive words, but they also wouldn't list it as the one adjective that defines them.

So I ask of you, as you are out and about during the month of April, don't just allow your thoughts to veer towards Autism Awareness, allow yourself to look at all of the other positive traits that help define the person. Help others understand the value that the Autistic Community brings to the greater community. Create accessible opportunities. Understand  barriers and allow for creative thinking to ensure that those with Autism have the chance to participate in a dignified way. Remember "FAIR isn't everyone getting the same thing, FAIR is everyone getting what they need in order to be successful." And don't forget the caregivers. Sometimes we are run down, out of patience, and frankly - lonely. Let us know that even on the worst days we are making a difference, we matter, and that you care.

To Vaccinate or Not To Vaccinate, Is That A Question?

Autism and vaccinations, why we chose the path we did. 

I don't think that any experience in life can prepare you for the overwhelming sense of hopelessness you feel when you find out that your child has - something. As a parent, you have a myriad of experiences where you feel out of control, that the circumstances are beyond your fixing. There is fear, there is the heart wrenching, stomach dropping panic. Then there is this moment where you go into information seeking, problem solving, protective parent mode. You search for the source of the problem, and by human nature, you seek to fix what is wrong. All the while there is this voice, slightly muted, allowing you to take in everything around you, but still there, whispering "what could you have done to prevent this situation"?

When C was diagnosed, it took a long time to get through all of the emotions. I went through the denial stage for almost a full year. I knew that something was different with C, before he was diagnosed. I brought it to the pediatrician's attention. He is the youngest of our three boys. He is cute, and everyone did, and will sometimes still do, anything for him. His language was delayed - but that was attributed to everyone talking for him. His gross motor skills were lacking, but that was attributed to everyone carrying him, not giving him the opportunity to jump, run, skip. His social skills were delayed, but that was attributed to him not having enough access to other children, to his brothers being more advanced and not including him enough. We worked for a year to bring him up to speed, but by 3, it was clear that he was falling further and further behind. That is when we were handed the life altering news - C has Autism.

We were mad. We were mad at the pediatrician for delivering the news. We were mad at the school system for not working fast enough to confirm the diagnosis, and then mad that they were slow to develop the IEP. We were mad that we didn't have enough resources. We were mad that we didn't feel like we had support. We were mad at ourselves. Somehow we didn't do enough. We should have reacted sooner.

Then we went into our problem solving mode. Kell knew it would be better. We would get him enrolled in school, we would do whatever it took to "fix" it. I went into research mode. I looked at every possible cause of Autism, searched the internet, tried to locate support groups, blogs, message boards. We formed Kinera Foundation. All the while I searched for causes, cures, recovery stories. I found the medical journal published by Andrew Wakefield. Coming from an upbringing that was holistic, and not reliant on medical intervention, this paper seemed to speak to me. C was a normal baby - quiet, happy, loving. And then it all started to go down-hill, slowly. I remember him saying baba, dada, and then there was a point where he just stopped. Was it all linked to his vaccinations? Was I to blame?

I found this paper as the reports of misconduct and false findings were coming to light. It was confusing. I spoke with many parents of children on the Spectrum who fully believed the study. I checked out Jenny McCarthy's book about her son recovering. I wanted to "fix" my baby. I wanted to find out why - Why C, why was he handed this stack of cards. It all seemed so unfair. And I felt like I was drowning in information, drowning in guilt, drowning in a process that I knew nothing about. I felt helpless. I felt like there was no way out, and I so desperately wanted to make it right. It is my job to protect my children, and somehow I failed.

During this time, we were in and out of doctor's offices. We would arrive in another cinder block building with white walls and a panel of glass separating us from the torture that lay behind the closed doors. C was filled with anxiety. Every time we approached another set of glass doors, leading us to another set of white jacket clad adults, he would start crying, and his crying would turn to screams, and his screams would lead to him flopping on the floor - or valiant attempts to escape. During these series of tests, we had blood work done, and found that C has a wheat and egg allergy. The MMR vaccine is cultured in Chick Embryo. I started to put together my own hypothesis. C has an egg allergy, C has Autism, the MMR vaccine is cultured in chick embryo, the controversial MMR vaccine is said (though discredited) to cause Autism. Hmmm.

I did what any responsible parent should do. I discussed this with our pediatrician. I asked for his professional opinion. And I did a bit more research.

Fast forward to today - a time where there is still controversy regarding the MMR vaccine. Parental rights are being questioned, and more importantly, children and adults have the measles. Every day another case is reported, every day parents have to question whether their children are being exposed. Every day we face the fear that we cannot fulfill our main responsibility as a parent - To PROTECT our child - because of a choice that another parent made.

I made the choice to continue vaccinating C. We chose to vaccinate on a staggered schedule. C does not receive all of his shots at once. We wanted to make sure that his egg allergy would not further impact his development after receiving vaccinations. We decided that having a child who has difficulty expressing feelings, who has an unmatched tolerance for pain, and the inability to communicate if he is ill, should not be susceptible to an illness that is preventible. C has had no adverse reactions to his vaccinations. Despite receiving the MMR, he has continued to make progress.

I don't believe that the government should tell parents how to parent, but I do believe that it is our responsibility to make informed decisions. I don't discredit the stories from other parents, whose children's symptoms of Autism emerged after vaccinations. I do believe, with my whole heart, that there is not one cause of Autism. It has taken me a long time to let go of asking "why". I am not a scientist, a doctor, a biologist, a psychologist, but I am a mom. I do have common sense. If there were one cause of Autism, would their be a Spectrum of symptoms, would there be a Spectrum of severity, would it affect such a broad demographic? Autism has continued to rise, despite a decline in vaccinations. Autism symptoms onset at varying ages, it does not discriminate. It affects Upper Class, Middle Class, and Lower Class citizens, it reaches all corners of the globe, and it presents differently in each individual case. No two people with Autism are alike.

Genetics, environment, food, pollution - there are an abundance of potential sources for the cause of Autism, and why should we pinpoint just one? If there were one cause for Autism, wouldn't there be one type of Autism? If there is a Spectrum of causes, doesn't it make sense that it is a Spectrum Disorder? While the cause may help us in detecting future cases of Autism, it certainly doesn't change things for my family. If I were told while pregnant that my child may have Autism, it would not change my love for him, it would not stop me from raising him. It is not a life threatening disease.

I have come to accept Autism. There are days when it sucks. There are days where I would like to take Autism and obliterate it. But then there are times where I realize that I am a better mom because of it. Our family is closer because of it. Our child is funny and loving, social and smart. There is no way in the world I would trade him in - no way I would or could consider life without him.

C has Autism, he is up to date on his vaccines. It was a choice we made, and feel is in the best interest of our child. There is the chance that an un-vaccinated child may develop measles, and there is the chance that a vaccinated child might have Autism. Science has proven, on multiple occasions, that the findings of Wakefield and his team were false, that the MMR vaccine does not CAUSE Autism.

I am honestly grateful we chose to vaccinate. I would be a nervous wreck if C were un-vaccinated, and exposed to measles. He cannot tell us he is sick, the preliminary symptoms would come and go, and we would have a child with a horrendous rash, fever, vomiting, diarrhea, headaches and pain that he would not be able to communicate. We would struggle to help him alleviate the pain. Autism does not have the potential to take my child too soon. The effects of measles or any other preventable disease does. Autism is an adjective, helping to describe C, and C is so much more than 1 adjective.

When Will The "Why?" Come?

We must presume competence, our children are more cognizant than we think.

I came across a post today, while searching #presumecompetence, that talked about a six year old boy asking his father why it was hard for him (the boy) to be good. I tried to link the post, but couldn't get it to work, so here is a snapshot.

I wonder when C will ask this very same question and have tried to formulate a response. It is my opinion that he should know his diagnosis and I want to be honest, and yet sensitive to what it will mean to him. I wish I knew what was taking place in that beautiful mind, but he does not have the words to effectively let me in. 

I feel like I am always a walking contradiction. I know that he understands so much more than he is able to communicate, but it leaves me, much like everyone else, wondering how much he understands. I long for a conversation that is more than a playback from a scene from Toy Story. I try to read into scripts, thinking maybe there is an underlying meaning to the words he repeats over and over. 

I can sometimes see in his eyes the disappointment in my not understanding the simplest of requests and sometimes feel that he has given up on me. Rather than continue to try to make me understand, it must be easier to just walk away. 

I can't deny the progress we have made. C has speech therapy 3 x's a week between school based services and outside therapy. The additional therapy has made all the difference in his ability to slow down and enunciate his syllables. And yet, I still long for a conversation. I want to hear how his day at school was, from his perspective. We rely on the interpretation of his day, from the eyes of his teachers and aides. We anticipate the multi-paragraph email giving us just a snapshot of his 7 hours away from home. Does he have friends, that are meaningful to him? Did he enjoy the lunch I packed? What was his favorite part of the day? 

One day, I know he will be able to answer these questions. I remember the frustration we both felt when he would stand in front of the refrigerator, grunting - with no words to tell us whether he wanted juice or milk. The progress feels slow, but it is progress none the less. We will continue to support him in his quest for more language, and know how lucky we are to have the communication we do. I can bide my time, and remind myself to be patient. He will tell us, in his words, how he feels. He will ask us, when he is ready, why he has so many supports, why he feels different. Until then I will pray for the strength to continue to presume competence, and will remind myself daily that he is in his own right, brilliant. 

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. 

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

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

What Does 1 in 68 Really Mean?

Educate, Include, Empower, Embrace

I sat down to write Part Two of our Disney Adventure, and found my fingers itching to write about the CDC's new report highlighting another rise in the number of children diagnosed with an Autism Spectrum Disorder. While Disney is always a fun topic, I think that it is going to have to take a backseat today.

Yesterday the CDC released a report indicating that 1 in 68 children are diagnosed with an Autism Spectrum Disorder. If you click the above link, I think you will be pleasantly surprised that their report offers hope, calls for more information, more awareness, more education, a plea for early diagnosis. It does not slap the epidemic stamp on our children, it does not induce fear, and iterates the need for clinicians to use developmental screening tools to monitor a child's development and to take note of deficiencies, to educate parents on early intervention tools available.

It is also important to understand that this report is based off of children 8 years of age, and from 11 ADDM sites. In addition, the results are based on data collected in 2010, meaning that the children in the study were 8 at the time the data was collected.

I feel that it is important to take from these numbers that children with Autism, adults with Autism, are all a part of our community. You know someone with Autism. You know a family affected by this diagnosis. It should now be considered a part of our society's norm. While I understand the need and the want to know the cause, we need to embrace the community it affects. We need to ensure that our community at large is educated, understands the need of the individual with Autism, and offer community support, inclusion, and opportunities, equal to those of their typical peers.

When C was first diagnosed I found myself scouring the web, searching for a cause, secretly hoping that I was not to blame. I prayed that I didn't "give" this to my son. My grief turned to guilt. I wasn't alone, my husband felt guilty too. We simultaneously reassured one another that we were not to blame, while searching for hidden truths to the suspicion about ourselves. We started down a dark path, until one day we realized obsessing over the "why" wasn't going to help C. We redirected our efforts. We began looking at interventions, therapies, tools and accommodations to help C thrive. We educated ourselves and our family. We are continuously learning when to take a risk and push C's comfort threshold, and when to simply let him be... him.

C  having Autism isn't scary, it isn't the end of the world, it simply is. We hear that we should strive for our children to be like their "typical" peers, but what does that really mean? Who defines typical. We need to help our children survive in their environment. We need to help our children cope with the enormity that the world is. We need to give strategies to them, to ensure that they are reaching their full potential, and pushing them to be more than that. While a "cure" sounds fantastic in theory, what are we curing?

1 in 68 is alarming. What does 1 in 68 mean? It is no longer a "Disorder" that is rare, it is no longer an anomaly. Autism is a reality. We need to continue to educate our communities. Autism Spectrum Disorder. It is not a disease. It is not communicable. It is not scary. Our children are not violent. Our children have feelings. Our children understand, more than many can even comprehend. Our children have rights. Our children have names. Our children aren't just Autism. Autism isn't our children.This is the face of a child with Autism.


Autism Awareness Month is right around the corner. What does that mean? It means educate your neighbors, your co-workers, your family and friends. Take a moment to raise awareness. Does your child or a loved one, or a friend's child have Autism, what about ADHD, Developmental Disability, Intellectual Disability, Down Syndrome, Epilepsy, Cerebral Palsy, Oppositional Defiance, the list goes on and on, but what I want you to take from this is to please, please help educate those who need help understanding. Reach out to those who need help, support, respite. Don't look at 1 in 68 as a sad number, see it as a reason to help fight for the rights and abilities of those who fit within the statistic.

For the full CDC Report : CDC Report

For information on Child Development Screening: Child Development Screening

The File Cabinet

A Verbal Stim, or Breaking into the Conversation?

"Mommy, where are we going?"

Did you hear that?? He asked a question, as I was getting his shoes and socks on, as I was preparing him to leave the house.

"We have to take your brothers to wrestling practice."

"Can we go too?"

Did you hear that?? A two part exchange? Real conversation??? One that is relative to what we are doing, what we are talking about. One that is not scripted, pulled from the files of shows and movies memorized. A conversation.

This child, I was told, would be able to speak...one day. To what extent, was in question. Just last year, it was suggested that he would not succeed in an inclusion environment, that he would be provided 1:1 instruction in a self - contained classroom. I fought. I fought hard.

Having a child model behaviors of his peers is what our children need for success. The lessons learned from "typical" classmates can be greater than lessons learned through instruction. Our children need to play, with one another. They need to foster their imagination.

Stop the scripting, I was told. It is a verbal stim, I was told. It will suck him into a world that can become dark, lonely, detrimental. I disagree. His scripting has led to conversation. When he doesn't have the words on his own, he has words, in his file cabinet that he can pull from, and keep him engaged in the conversation.

I know there are many views on stimming, scripting, and other behaviors associated with Autism and Sensory Processing Disorder. I have sought advice and guidance from OT's, SLP's and educators. With their view point in mind, I have formulated the opinion that while his "verbal stim" can suck him into a world all his own, it also allows him to continue verbalizing. To continue practicing social skills and imaginative play, in circumstances that would otherwise leave him feeling left out of the conversation, fostering our belief that it is just a stim, and not his way of breaking into a conversation, in a time where words may otherwise fail him.

Allowing a child to go into a corner and spin the wheels of his Tonka, without engaging in the play, could lead to a dark and lonely world, I acknowledge that. Allowing the child to spin the wheels, and engaging with the child, creating conversation, asking "why", "how", facilitating conversation, may bring us into that world, and show that we respect the behavior, but also want to understand it, want to be a part of it. Taking these moments to build the relationship, and taking the time to ask questions to our child, shows that we respect their behavior, and respect them enough to question it, engage in it, and want to be a part of it.

There are many times, just like our conversation above, where I get C ready for the day, to go out, and while I warn him that we will be leaving, I fail to give him full details. With 3 kids, life is busy. Sometimes, it doesn't seem that there is enough time to fully explain where we are going, and why. With "Neuro-Typical" kids, this works. "We need to leave, now, and I will explain it in the car". Children with ASD, SPD, or other diagnoses, they need, and deserve more. My conversation above not only validates the need to constantly converse with our children, but that, despite their seemingly disinterest in our conversation, they are hearing what we are saying.

C constantly amazes me. Our initial diagnosis was hard. While he showed signs of one day being able to have conversational skills, no one could predict what those skills would evolve into. While we are still working on expressing needs and wants, slowly and surely we are making progress. Little reminders, like this, encourage us, as parents to continue pursuing more. To engage, to keep talking, even when it looks like he has lost interest. The words we say today, may be pulled from his "file cabinet" tomorrow, and help him express his needs in a way we never thought he could.

A Time for Thanks

The holidays are quickly approaching. This is truly my favorite time of the year, and Thanksgiving is by far my most favorite holiday. It is a time when friends and family come together to celebrate each other, to break bread with one another, and is focused on being thankful for all we have. 

Again, I feel compelled to express my sincerest gratitude for all those who have supported Kinera Foundation over the course of the last 6 months. Because of each of you, we have reached more parents and caregivers than I hoped to reach in a year. We have allowed those who service our community an opportunity to speak about their services in a forum that directly reaches those they are trying to help. We have made friends, our children have made friends, and we are on the path to truly fulfilling our mission statement.

THANK YOU!!

With the approaching holidays, comes the stress of preparing our homes and families for the whirlwind of festivities. There are numerous tips and tricks to make this easier on our children who have sensory sensitivities, but below are some tips from a fellow mom, who has attended every meeting and has offered an immense amount of support for Kinera Foundation's future.  

6 Tips to help your child during the busy holiday season

1. Give your child a schedule of events for special activities, particularly on days with lots of transitions. Whether it’s a written schedule or one with pictures for younger kids, your child will feel calmer and safer knowing what is coming up. Discuss the schedule with your child. Sometimes just knowing what’s next can help children with special needs feel less anxiety.

2. Have a code word your child can use if he/she feels overwhelmed and needs a break. Let your child know if he/she uses the code word, you will respond right away. Again, giving children some control during activities that may be overstimulating for them will reduce anxiety and fear of the unknown.
3. Before you leave for holiday parties, parades, or other events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child’s sleep schedule a priority, even in the midst of so many special events.
4. Children with significant sensory-sensitivities may require a little extra planning to enjoy holiday events. For example, you may need to bring along ear plugs if you will be in a noisy environment or sensory fidgets if the child is expected to sit still. For sensitive kids who need to wear dress clothes for events, bring  along some soft clothes for them to change into as soon as possible. Be prepared by knowing your child’s specific limitations and how you will handle them if the need arises. Don’t wait for the meltdown to begin.
5. If your children have food sensitives or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or autism often already feel different, so be sure to include them in as many holiday festivities as possible.
6. If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holidays distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

Great article about how Jewish families can celebrate Hanukkah with their children with special needs: http://www.abilitypath.org/areas-of-development/physical-development/sensory/articles/hanukkah1.html
 
A few more tips: http://specialchildren.about.com/od/inthecommunity/a/holiday.htm
 
http://www.friendshipcircle.org/blog/2012/12/12/13-holiday-survival-tips-for-your-child-with-special-needs/

These are great tips for what others can do for a parent of a child with special needs: http://specialchildren.about.com/od/inthecommunity/tp/Things-to-Do-for-a-Parent.htm
 
Gluten Free Holiday Cookie Recipes
http://noshon.it/recipes/13-gluten-free-holiday-cookie-recipes/

A Call to Action or a Slap in the Face?

Is there a point where we unknowingly sacrifice one's dignity for our own sanity?

Many of you may have been following the threads and posts regarding the blog written by Suzanne Wright regarding the  "call to action", demanding a national response to make a plan for the estimated 3 million Americans that have Autism (birth to adult). If you have been following the threads, you also know that this was a direct result of the resignation of long time contributor to Autism Speaks, John Elder Robison.

I have taken a few days to read through the threads, have been cautious to not jump on one bandwagon, or the next before formulating my own opinion. And what I have realized, in waiting it out, and reading the posts and comments, is this... we all have an opinion. I have come to the conclusion that the root of both blog posts, in my opinion, are for me, truthful, heartfelt, and from a place of compassion. (Click the above names for the link to each post)

Suzanne Wright says, "These families are not living. They are existing. Breathing - yes. Eating - yes. Sleeping - maybe. Working - most definitely - 24/7."

Well here I am, in the flesh, and therefore I am living, but I see the metaphor. Am I living the life I envisioned? Well that depends upon the time-frame upon which I was asked "what do you envision for your future". 20 years ago, I knew I would be married, knew I would have a home, and a family. 15 years ago, I couldn't see past my nose, I was so wrapped up in myself and didn't know what the next day would hold. 10 years ago I was a single mom, hoping that I could recoup my previous dream of a husband, home and family. 5 years ago I envisioned a home with 3 energetic boys, growing up to be a lawyer, actor and baseball player. I envisioned 3 daughter in laws, plenty of grandchildren, and a retirement filled with travel and visiting all my grand-babies. Today, my future is full of unknowns, but I do know that I still have 3 loving and healthy boys, full of energy and potential. Beyond that, I know, from past experience, that my vision of the future will continue to change, as our lives change. I have no doubt, however, that I am living my life to the fullest potential.

I do understand the analogy, perhaps I am not living to my envisioned potential. Again, it is up to us to re-write our vision of our future. I can appreciate what she is trying to say. As parents, we fight, day in and day out for the things that many parents take for granted. And while we fight, those same parents, who take for granted the small things, seemingly judge how we parent. It is daunting, it is hard, it is tiring. I do forget to eat, I have lost sleep, I do worry endlessly about such miniscule things, that suddenly seem so large. It is hard to parent a child with Autism. It is hard to parent.

Mr. Robison based his resignation from Autism Speaks on his belief that while Autism Speaks has the perfect platform and fundraising ability to provide and advocate for those on the Spectrum, they lack the tenacity to "speak" on behalf of those with Autism. In addition, he states "we do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated." He feels the staffers at Autism Speaks need help "to understand how destructive its messages have been to the psyches of autistic people".

Again, I get it. I understand how we, as part of the "normal" population, portray those with Autism as a problem to be solved. I have many times said that I would choose C with his "quirks" over C as someone else. We walk a fine line, when we try to define our children, our loved ones who are affected by Autism. While we want to help them succeed, and function in a "normal" society, we don't want to lose the person they are, because of the condition they have been diagnosed with. How do we balance, without teetering over the edge. 

I have written, many times, that when C was diagnosed, I felt as if I lost my child. I mourned my vision of who he was, felt that his future was re-written. I mourned the parent I hoped to be, and had to persevere.

Those feelings were my initial feelings, they didn't stop there. Together, and as a family, we are working on the chapters of the book. Writing it in hopes of creating a beautiful body of the story, that depicts a life of love and happiness. With every birth, a story unfolds, and changes as circumstances change. We are fluid, and need to bend and mold to each new chapter. We need to learn from our previous chapters and use those lessons to create the proceeding story. Our book is right in front of us, waiting for us to record all that takes place. Like every book, there are tragedies and triumphs, but it is how we outline our future chapters, based on our previous writing that makes our story unique and beautiful.

We should not feel as though we need to hide the hardships, because that is what makes our story come to life... However, we do need to be open and understanding of other stories, chapters, that take place around us, unfold before us, as they too have a vital role and can intertwine with how our story continues.

Being real and true to what you feel is important in family communication, but what is more important is explaining those feelings to your loved ones, ensuring they understand the place you were in, and the lessons learned from being in that place and experiencing those emotions. 

While I understand why Mr. Robison feels resentment towards Mrs. Wright's post, I can't help but to relate to what she says. There are days where just being, in this place, in my life, is hard. It is a challenge to manage the day to day. It is a struggle to be patient, to understand the stim, to respect C's desire to do something other than what is on my agenda. I also know that this is a daily struggle for every parent. Do we make it harder on ourselves because we have a diagnosis?

Every day I remind my boys that they have a choice to make... They can choose to make it a great day, or choose to have a bad day. We control how we manipulate our feelings, however I believe we can't control how we feel in a given moment. We can choose to use our feelings to our benefit or our detriment.

At times it is hard to acknowledge how we feel and then take those feelings and make them positive, but with work, it can be done.

I can understand why some may feel that airing a parent's negative feelings on a social media site, seems incomprehensible, but I get it. It makes those feelings real, enables others to express sympathy and empathy. I also believe that when you use social media as an outlet for your feelings, you need to be aware and ready to answer the questions and backlash that will certainly come with your post.

As we continue to advocate for those with "different abilities" we also need to embrace the hardship for all affected by it. We are all being graded on a massive curve, and need to remember that our personal experience, belief, and way we handle our experiences are different from others. Just as those with Autism are on a spectrum and all require different levels of care and treatment, we as humans are on a broader spectrum, and too are in need of different levels of care and treatment. If we are asking the normal population to embrace and understand the Autism Spectrum, shouldn't we be advocating the same for ourselves?