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.

The Foundation - Building Blocks of the Future

I get asked a lot "how do you do it?". I always assume they are addressing my having 3 boys, and I say that "I am very lucky to have been able to leave my full time job so that I could focus my efforts on raising my 3 boys". A few days ago though, I was asked the same question, but just felt the context of the question was different. They were asking, indirectly "how do you keep your sanity while managing your child who currently is dropping to the floor while simultaneously trying to run away, with a scream so high pitched the neighborhood dogs think they are being summoned to a party". And that's when I smiled, counted to ten, picked my boy up, told him "no" again, and said "with patience and perseverance".

The thing is, having a child with special needs is more rewarding than it is difficult. There are times when we think that we won't get through a certain phase (Potty Training for instance), or when we feel in our hearts how much harder raising C has been in comparison to the other 2, BUT... the joys that child has brought our family, the humor, and humility he shows us everyday, the life lessons he has taught us, are more valuable than any number of life experiences previous to having him.

What does the Future Hold? 

 

I always knew I wanted to be a mom. I wanted to be a great mom. I wanted to be the house that all the kids in the neighborhood had to come to. I wanted to be the confidant, the friend, the stern voice, when needed. I knew my destiny was motherhood. I have said so many times before, that "the diagnosis" was life changing. We had to go through the stages of grief, to realize that it wasn't just C's future that we no longer had a clear vision of, but our future as well. I think the hardest part has been long term planning, taking each day as it comes. I am a planner, and not knowing what life will look like in 15 years has been frustrating.

The thing is, none of us really know what our future holds. We have all asked, "what does that mean for my child's future?", but we can't really determine any of our children's future. We lay the foundation, but ultimately our children are the one's that pave the path to their own destiny. I always envisioned A as an engineer or architect. He can build intricate and extravagant creations from Lego's, he has always had the ability to do so. He, however, has always expressed interest in acting, directing. From the time he was a toddler, he would set his toys up on stage, and direct us on how to act, what to say. We thought it was just a phase... really, what 2 year old understands what actors do, and have interest in that field? Well he persisted, and despite my dreams of MIT, he has paved his own way, and wants to pursue acting. After 10 years of interest, it is our responsibility to help him go after his dream.

When we get "the diagnosis", we grieve the "what could have been", then we try to reinvent, "what will be". We focus our efforts on fostering our children's abilities, how to ensure a fulfilled life, while still balancing our personal dreams and goals. It repaves our future, and lays a new foundation for our way of life.

BUT... in those moments of reinvention, come moments of triumph, hope, light, laughter. There will be many bends in the road. There will be times where we aren't strong enough to go on our own. In those times, we will rely on our family, our friends, our own support network to help us build and rebuild our foundation and path. And in the meantime, we will continue to take each challenge in stride, we will cherish each of moments of triumph, no matter how great or small.

"A Journey of a Thousand Miles Begins with a Single Step" - Confucius

"The Team recommends that C remain in an inclusive setting for the upcoming school year."

While to many these words have little meaning, for our family it is a testament to how far we have come. Just last year, there was question as to whether or not C could thrive in an inclusive setting. Data was recorded, showing that his attention span and need for prompting and redirection was likely more than could be handled in a classroom with "typical" peers.

Hearing that my child may not have the necessary tools to be successful in an inclusive classroom is heart wrenching. It is one more notch on the belt indicating that my child is "different". It leaves me wondering what that means for the future. It feels as if I am conceding to the diagnosis, deflating the hope I mustered that we could work through the diagnosis, and pave the path to an independent life. Taking away the typical classroom setting also felt like we were beginning the first steps of training our son for a life of dependance, and it seemed like it was just too soon to throw in the towel.

We questioned the placement, we requested a visit to the Self-Contained classroom, we called upon everyone we had met along our journey and asked for advice, guidance, and the strength to call into question a decision we had no part in making. We made our case, and we were able to move C to his home school, where a Self-Contained placement was not an option. We began a journey where in our hearts we knew our child would succeed, but felt the ever present nag of going against the judgement of our team. We prayed that our instinct was more insightful than our teams' decades of experience.

And yesterday, our instinct proved to be not only true, but also a reliable guide as we continue our journey. C was able to master all of his goals from his IEP, he was able to do so in a typical classroom setting, with typical peers. He has a schedule full of transitions, many different teachers, and he succeeded with grace and dignity.

When I think about our journey thus far, I am filled with such pride, for my boy who we were told was on the severe end of the spectrum. A boy who fought to unveil his inner personality, and trust those around him to experience the joyful, caring, charismatic, social, and intelligent boy that he is.  He showed that data is just data, and if given the proper tools, in a setting that is conducive and considerate of his needs, he can thrive, and grow, and prosper. He can begin to pave his way to his life of success and independence.

Thinking over the words "The Team recommends that C remain in an inclusive setting for the upcoming school year", takes my breath away. It is the equivalent of hope, of success, of equality. It means that C is up for the challenge. That he is not willing to be a victim of a diagnosis, that he is willing and ready to work for acceptance and equality. It means that we can trust that we have a team that is also ready to challenge themselves and C to work towards our shared goal of equality and independence, while also maximizing his educational experience. The path to those goals may be different from the rest, but we know in our hearts that it is possible.

An inclusive classroom is not the best learning environment for all children. There are children who require the attention, small classroom size, and additional tools, accommodations and services that a Self-Contained classroom provide. While we fought for an inclusive setting for C, we did so with careful consideration, calculation, and guidance from professionals. This educational setting works now for C, and unfortunately we cannot predict whether it will continue to be C's LRE (Least Restrictive Environment). I strongly feel, however, that all children should first have access to an inclusive educational setting, as we cannot rightfully determine a child's best educational setting, without giving a child the opportunity to learn and socialize with "typical" peers. With the recommendation for C to be placed in the Self-Contained classroom, that the Team initially made, we felt that C was not given the fair and legal opportunity to try to learn alongside his "typical" peers. For that reason, we questioned his placement. Again, we knew in our hearts, and our instinct screamed at us, to continue to question the recommendation. But as we have learned along the way, each child is different, and their abilities shine through in their own unique way and in their own unique environment. We have an IEP, which by definition, is an Individualized Education Plan. No two children learn in the same way, and this needs to be considered when drafting your IEP.
I would also like to take this opportunity to thank our amazing IEP Team. While we know there will come a time where we will disagree, we have created a relationship of respect and I am so thankful for the hard work, dedication, and out of the box planning and brainstorming sessions. Each and every member of our Team holds a special place in our hearts, and we are so thankful to each of you.

Slow and Steady Wins the Race

Meaning Beyond the Words

"School is broken"
"Night night is broken"
"Dinner is broken"
"The pull up is broken"
"The potty is broken"

There is a pattern here. When we don't want to do something, it simply becomes broken, and problem solved, at least in the mind of the 5 year old who struggles to find the words to simply say, "Let me finish what I am doing first".

We are slowly learning how our boy communicates, and trying our best to keep him on the schedule that he sometimes doesn't want to follow. We are always a walking contradiction, to the diagnosis - C wants a schedule, but on his terms; to the mantra that we are the parents and we are in charge - though C dictates much of our lives; to the fear - we hate living with it, but without it we become complacent.

For the past two years, C's progress has been noticeable and yet slow and steady. He seemed to tackle his goals one step at a time. This year he is soaring - Killing our expectations, smashing his goals, and again reminding us that he has no boundaries. He is the keeper of his accomplishments, and he will unlock those doors when he is ready... and we better be ready for that door to be unlocked, because before we know it, he will be counting to 100, speaking in 2 and 3 sentence paragraphs, telling us - verbally - his wants, his needs, and lately, even his feelings ("I am happy", "That makes me sad", and my personal favorite "Frustrated... I am not FRUSTRATED!")

And then there are moments where his words simply fail him, his verbal communication synapses aren't firing, and all the progress we were just rejoicing has retreated. We have tantrums, head banging, stuttering, and tears, lots of tears. We rely on our past , to help us navigate the now. We return to trying to hint at words that we think he is looking for, we provide options, we pray that in some way the missing words will suddenly flow freely and meaningfully. Sometimes it helps, we hit the nail on the head, we have solved the problem quickly and efficiently. We high five ourselves for knowing our child so thoroughly, that words aren't needed to be able to effectively communicate. And then, there are those times, when providing the words is a bigger frustration, if we had just waited a few more seconds, the words would have come, he would have been able to tell us on his own, in his way, and we retreat, with the white flag waving, defeated. C feels defeated too, he wanted to tell us, on his own. We were just too impatient to wait. We didn't have faith that he could do it on his own, and it deflates his confidence. It is apparent in his eyes. Those sweet eyes tell it all.

My favorite things to read, when perusing online, are the real stories of mom's like me, navigating the many twists and turns this diagnosis can take. The mom's who are real, the one's who tell it like it is, and aren't afraid to be optimistic, even when it is rejoicing the seemingly small accomplishment. Let's face it, we have to celebrate with equality, the smallest accomplishment can be as rewarding as the biggest. C getting frustrated that we stepped in, and spoke on his behalf shows an understanding beyond ours. He knows he can do it, he knows he has the words, he expects us to let him show that he knows.

Life is fast paced, it truly is passing by at warp speed. Yesterday I was bringing home my 3rd baby boy, my sweet, and today he is in kindergarten. We have conditioned ourselves to operate at a fast pace, equivalent to the world around us, it is our coping mechanism, either keep up, or get left behind. C is imploring us to slow down, give him the chance to show us that his saying "school is broken" means that he is working at his pace, and he will catch up to us, if we give him the chance. Slow and Steady. And when we slow down, hear the words, and understand their meaning, he complies. He finishes setting up his next Toy Story Scene, to come back to after school, and puts on his jacket and backpack, and waits by the door for his bus, ready to tackle his next accomplishment.

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.