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. 

Thank you Chuck E Cheese

Tales of a Sensory Friendly Event

We went to Chuck E Cheese on Sunday. Typically I avoid that place like the plague, because when you go there, you just may come home with the plague. Additionally, it is loud, crowded, kids run around with little supervision, and I end up with a headache, I get anxious, and quickly become the obnoxious helicopter parent.

Why, you may ask, did we go to Chuck E Cheese, if it is such a terrible experience? Because of this:

The Glen Burnie Chuck E Cheese hosted it's first ever Sensory Friendly Morning, and we were so thankful to be included.

Sensory Friendly Events are becoming more popular, as awareness for the need expands. With the lights dimmed, less children, earlier hours, our children were able to play their favorite games with no wait time, climb through the overhead tunnels without physically superior children pushing their way through, one on one time with the beloved Chuck E Cheese, and so much more. There was no judgement from other parents, there was a sense of community, though the event lasted only 2 hours.

Before C's diagnosis, I don't think I would have understood the need for these events, I don't know that I would have given it a second thought. Now, we live for these events - more for my sanity than anything else. While I don't think that C understands his diagnosis, or even has an inkling that he has additional needs, I am hyper sensitive to it. C has no physical signs of a disability, and now that he is lacking his two front teeth, it is clear that he is no longer the toddler that his body language and communication skills indicate. I loathe going to crowded, kid infused, loud public places. I anticipate the worst, mentally prepare myself for the multitude of situations that can occur. Of course, we can't live in a bubble, we have 2 other children who deserve to experience all the joys of Chuck E Cheese, Disney, Museums, the Zoo, and even the mall. And to top it off, those who don't know C, don't understand his behavior, don't understand why he won't answer them when they ask a question, or make a request think I am raising a rude child, when in reality, it is their lack of understanding that can escalate a situation.

Knowing we can enjoy a place like Chuck E Cheese without having to be hyper-alert, that C is among children, families, parents and employees who have a deeper understanding of his need, means the world to me. Furthermore, when these events are advertised and held, we continue to raise not only awareness, but acceptance, of our children with varying needs.

To those that allude to our children being entitled, you couldn't be more wrong. Just as a person who is blind should have access to brail, children who cannot handle the sensory overload that is common to venues like Chuck E Cheese, should have access in a way that is sensitive to their needs.





The attached pictures depict just some of C's moments of pure joy. We have no less than 15 pictures of C riding the Chuck E Cheese Car (picture on the left is of C admiring his picture printed from the ride). He played a racing game that required him to jump on a built in pogo stick in order to make his character move. He used the mallet to "Wack A Mole". C made eye contact with Chuck E Cheese, and introduced himself. He danced to "Head, Shoulders, Knees and Toes" with the other children. He tried his hand at Ski Ball (with assistance). There was no limit to what he was able to try, he was able to take his time, and he chose what he wanted to do, without the pressure of the next kid behind him waiting for a turn.

Again, we couldn't be more grateful for the opportunity, and will certainly participate in future events that this Chuck E Cheese location hosts.

A Retrospective View Requires a Great Big Thank You

 The strongest of all warriors are these two -- Time and Patience, Leo Tolstoy War and Peace

Two years ago, almost to the day we received our diagnosis. As many of you know, every detail of that day are engrained permanently in my mind. I can still recall each of my senses, make them tangible, as if I were reliving that moment. I remember the feeling of the sweat trickling down my back as the doctor explained what Autism is and listed the various specialists I should call. I remember A and O sitting in the chairs next to the door trying hard to be patient as I tried to hear what I was being told, wishing that somehow the information could be absorbed via osmosis. I recall the smell of the room, that almost sweet, sickly sweet smell that doctor's offices always have.

How far we have come in those 2 years. It seems like an eternity ago, yet still close enough to know why we have chosen to do what we are doing. We have made sacrifices, on behalf of our entire family, hoping and praying that in the end the sacrifices will be outweighed by the lives we touch, by the depth of love, compassion and understanding we thrive on within our family unit. We certainly will never become rich, by choosing this path. We may not be able to go out on date night dinners with our friends, may not be able to take an impromptu vacation, or buy the trendiest line of clothing, but we hope to look back on all of this, from the rocking chairs on our front porch, and know in our hearts that our decision was the best for our family.

We hope to continue to reach families who have felt our loneliness,  who have felt the despair, who have heard earth shattering news from a doctor, who regardless of the diagnosis, want someone who understands on a personal level, the range of emotions they feel. We hope to be able to expand to neighboring communities and provide support to any and all who want to be included. We hope to collaborate with those who have filled their hearts with a similar mission.

My friends, this path we walk down is long, and hard. We are in it for life. Whether you have a child, a relative, a student, a friend, who is given any diagnosis, it is something that you live with, body and soul. How we move forward, how we receive the information we are given, will help us choose from the many paths laid before us. There is no need to walk down any path alone. Whether you become a part of our community for a brief period of time, or whether you become part of our legacy, you will always be a part of our family.

There is a light at the end of the tunnel. With each new day, with each new experience, we are touched by someone who makes a difference. Some days are harder than others. Some days we question the path we have chosen, and other days we see the light turn on, and suddenly we are given clarity. Even if it is just a brief moment in time, those moments are what we need to hold on to. Those moments provide the momentum to continue pushing forward, pursuing treatments, seeking answers, and providing unconditional love to those in our life who so desperately need it.

We see you, we hear you, we feel your presence. We know that our path may be the longest and the one with the most bumps, but in the end those bumps will have given us the endurance to continue our mission.

Thank you for your continued support, for your kind words, for sharing our story. Slowly we are growing, and we know that great things are on the horizon.

Coffee Talk - Generously hosted by Busy Bodies Gym

 Coffee Talk

We have been working hard over the last few weeks, securing a location for our monthly Coffee Talks, and we finally have the perfect location! Kinera Foundation is excited to announce that Busy Bodies Gym, located in Stevensville, MD, has graciously allowed us the use of their space.

For those not familiar with Busy Bodies, or the gym owner Andy Seiler, please visit Busy Bodies Gym for more information. Mr. Andy is himself an educator in Prince George's County and works daily with children on the spectrum. Here is brief biography on Mr. Seiler:
"Andy Seiler, has been working with young children for over 25 years.  He is a certified teacher, in the state of MD, and nationally certified Adapted Physical Education teacher (CAPE).  He has a B.S. in Physical Education and earned 32 credits in Special Education, as well as his Advanced Professional Certificate from the MD State Dept. of Education.  He owns Busy Bodies- Bay Area Children's Gym, an educational fitness center, on Kent Island where he has been teaching motor development classes for 7 years.  Andy lives on Kent Island with his wife and 3 children."

There are no words to properly express our gratitude to Andy for his generosity. Not only does Busy Bodies Gym offer a wonderful atmosphere, Andy's desire to help families and foster movement for those with special needs is a perfect compliment to Kinera Foundation's mission. 

We have our first Coffee Talk scheduled for August 21st from 7pm - 9pm. While we hope to offer child care for future Coffee Talks, we are unable to so for this first meeting. Should you need references for a qualified babysitter during the meeting, please comment below and I will privately message you names and numbers of local caregivers. 

We are excited to be able to bring our community of parents, relatives, educators and caregivers of all special needs children together. We hope to gain insight during this first meeting on what our community hopes to gain from our organization. We welcome parents and caregivers of children with IEP's, 504 Plans, newly diagnosed, or those interested in learning more about children with disabilities. Come with questions, stories, triumphs and fears. We are here to help and are looking forward to walking this journey with you.