The word.

Rarely do I preface anything I write, but I feel it is absolutely necessary here. I am human. Everything I am about to write about, I am guilty of doing many times before. Under no circumstances does that mean it is okay. Here it goes… (JR)

THE WORD.

Everyone knows our family and knows Elijah, knows about his diagnosis of autism, but there’s another diagnosis that few know about, that for a year and a half we haven’t shared publicly. We didn’t know how to talk about it, when the time is right, but that time is now. Waiting any longer is simply wasting time to make a change.

It was August of 2011, and we were in Iowa City for another round of tests, tests necessary to complete for Elijah to receive more services to help him live a productive future. Today’s tests included an IQ test. Melissa and I had discussed this thoroughly, and knew the possibility of that word being used. Yet, like being blindsided by a truck, there are just some things you can’t prepare for. No matter whom you are or how much you’ve prepared, you just won’t be ready when a doctor says that the IQ tests have concluded that your first born son is “moderately mentally retarded”.

It stings.  It sucks. It can turn an entire car ride home, three and a half hours, to complete silence. After hearing that word, there are no words. To this day, it’s still nearly impossible for Melissa and I to talk about. How exactly do you tell your friends and family that when you hear the R-word, it stings just as much to this day as it did that day? That such a horrible word, regularly misused and flung around with reckless abandon, had been attached to your child for the rest of his life? How do you get the point across without alienating people?

I’m human; I’ve used the word far too many times in the past. To me, it seemed innocent enough. I should have known better. The R-word isn’t an insult; it is a diagnosis, a part of the lives of 200 million worldwide and their families. It doesn’t hurt the person you are talking to, it hurts those who battle intellectual disabilities AND the stigma of their condition every single day of their lives.

I know this isn’t a popular post, but it is one that had to be written. We’ve waited long enough. Because I never, ever want to have to explain to my son what the r-word means. Having to have that conversation will completely break my heart. All you can do is be conscious enough to think before you speak. Try to avoid it. And if it slips past your lips, think of my little boy. Think of the sting it causes. A year and a half ago, I decided to avoid using that word…and I have yet to use it since. If I can do it, you can do it too. Take a stand for a better future…take a stand for Elijah. Spread the word to end the word. March 6^th. www.r-word.org

A letter from our family to yours

Each year, our family puts together a letter to our supporters to give an update on all things Elijah and our fundraising events. Since our community has grown so much this year, we decided to share an electronic version of the letter...without further anticipation, here it is. (JR)

 

Dear family and friends,

They say time changes everything. How right this saying is. A year ago, the highlight of our annual letter was the great news that Elijah had recently begun using a communication device to convey his wants and needs to us. We are so happy to say that in the last year, Elijah has surpassed his communication device and is fully communicating with us using words and sentences up to 8-10 words at a time! Words can’t express the joy we have, looking back now at how Elijah accomplished this by the age of 5, a vital ingredient of everyday life that one doctor said he would never do.

Along with the new found communication skills, we have noticed a natural improvement with Elijah’s social interaction. While we used to long for Elijah and Ryder to simply tolerate playing in the same vicinity, they have a new loving bond that is so awesome to see. Not only do they play well with each other, but they are best friends…and they are getting pretty good at conspiring together against us! Elijah’s teachers are happy to report this applies to school as well. It’s remarkable to pick him up each day and see the beginning of friendships being forged with his newfound skills!

Nothing great comes without heartache and sacrifice, and Elijah’s progress is no exception. Late last spring, we made the tough decision to consult with Elijah’s specialist in Des Moines to begin medication to help ease Elijah’s over stimulation and anxiety. We also made the decision to move our family to Pocahontas last August to give the boys and ourselves more opportunities within the community. While both of these decisions were very difficult to make, and were a huge adjustment for us all, especially Elijah, we are happy to see that both have made a huge impact on our family’s life and Elijah’s continued development. While future challenges are unavoidable, we feel that these major changes have put Elijah in a much better position to succeed to the most of his abilities.

With our move, our little boy has become quite the social butterfly. Elijah now finds great joy in going to Subway and getting a cookie or picking out his favorite foods at the local grocery store. Along with these trips, Elijah is working on social skills that will serve him well into the future. It is also a great way for him to work on communicating in a public setting, which is still somewhat of a challenge. It is also truly awesome to see so many members of the community creating bonds with our little boy, going out of their way to make experiences positive for Elijah, and offering encouragement along the way.

On our front, we had another great year of fundraising. Last year we took a new approach and instead of donating all of our proceeds to national organizations, we worked with local organizations like the Prairie Lakes AEA and Faith, Hope & Charity to make an impact in our area communities with a portion of our fundraising. We also reached out to a handful of school districts last April and read a book about Autism to the children, to increase awareness and understanding. We then donated the book for future classes to utilize. On a really exciting note, we were also able to take Elijah’s message to a worldwide stage with our good friend Matt Buyten, who rode a blue bike and had Elijah’s logo on his jersey at last year’s ESPN X Games to increase awareness.

Like every year, we have a full slate of events to offer you ways to support ERAAAP and our autism fundraisers. Once again, we are creating walk t-shirts for the cause. This year for something new we are offering additional styles of shirts and even fitted hats. You can see all the designs at http://keepcalmandbelieve.bigcartel.com . Orders are due by March 8^th. If for some reason you are unable to purchase online, and would like a shirt, please contact us and we’ll get you set up. In addition to our annual events like the autism walk and dinner in Storm Lake (April 19^th) and Iowa Autism Walk (June 8^th), we are playing a fundraising golf tournament in Pocahontas (April 21^st) as well as working with Cody Gilmore (Minneapolis Supercross April 12^th) and Matt Buyten (X Games) on awareness projects during motocross events on a national scale. You can stay up to date on our events on our blog at http://elijahsproject.blogspot.com We will also be using the blog to share progress on Elijah and other things autism related!

From the bottom of our hearts, we would like to thank each and every one of you that have supported Elijah and ERAAAP in the past three years. Whether it was walking for the cause, sporting a blue shirt, or just offering words of support on Facebook, we could never truly express how much it all means to us. It is amazing how far the story of our bright, blue-eyed little boy has gone in such a short period of time, and equally inspiring as we look forward to each year filled with more and more opportunities to make a difference. Now more than ever, we can see the difference that a little faith and a lot of love can make. All we can do now is continue to KEEP CALM AND BELIEVE. Thank you for believing in Elijah, in our family, in ERAAAP, and that the future CAN and WILL be a better place for children with autism. We couldn’t do it without you.

Sincerely,

 

 

 

Jeremy, Melissa, Elijah, Ryder Riesenberg

Judgement day

For a man such as me, the words normally come easily. For what I struggle to talk about, to put into the form of a personal conversation, I rarely have problems putting into written form. But as I sit here on Monday evening, I am conflicted. I don’t know how to put these thoughts together, whether they should be shared, or if they will resonate with our support system. I try not to dwell on the negativity of the word, instead I focus on the positive, but at some point, these thoughts need to be shared.

It was a routine trip to the grocery store in Fort Dodge with grandma, one that Elijah normally has few problems with. He has plenty of experiences going shopping, from an early age we embraced social settings and worked really hard to make them positive for Elijah. However, a trip to the store for my little boy isn’t a success without elaborate planning. With autism, routine is a big thing. So even though we might only need two things, Elijah will have a set process in his mind of things he would like to get, because that is how he understands a trip. The smallest misstep can throw his thoughts off, and unfortunately, we can’t control the environment around him. The best you can do is to take it one trip at a time, and be flexible.

This was one of those days. Elijah’s excitement was overwhelming, and he was having difficulty processing the trip. We worked through the routine, but for whatever reason after picking out a cereal he wasn’t able to transition back into sitting in his cart. What proceeded was Dad half-carrying, half-pushing Elijah in the cart through the last half of the store. Elijah was an active participant in picking out groceries, and I completed the list. It isn’t always ordinary, but it was functional and we made it through the store without many tears. Successful trip…or not.

For me, it’s the hardest part of raising a child with special needs. Not the words from the mouths of others, as a whole society does a good job of biting its collective tongues.  It’s the looks. The judgemental glances, stares, even glares from fellow patrons. By the time we reached the checkout line and the lady in front of us glanced not once, not twice, but three times in my child’s direction with such judgment written all over her wrinkly face, I had enough and somewhat politely, somewhat pointedly told her to mind her own business. I don’t do the whole public advocacy thing very well; again, the words escape me until I look back at the moment later in the day. But I couldn’t help but to feel sorry for these people. Are you so closed minded, so uneducated that you can’t even make a trip to the grocery store without judging? A wise person once told me, don’t judge a person when you see them, you never know what they might be going through. As much as I try to shield my emotions from the actions of others, it hurt. I thought about it, a lot.

It’s a cold reality, if I chose to let it be. For every advance, for every major gain in Elijah’s day to day life, there’s going to be moments like today. Moments were reality hits you upside the head and says, how are you going to react? Before I started this blog, I probably would have thought about it entirely too much, not really put it into perspective, and hoped the next day would be a little bit better. But in the process of thinking about the events, how to put them into words, it hit me.

So as I’m reflecting on today, I could chose to feel anger. But I don’t. It’s there loss. Because ultimately, it was just a handful of people living far less fulfilling lives, whose eyes have yet to see the joy of my little boy. To see what’s behind the picture they seen.

For every judgmental person, there’s more, so many more, like Elijah’s favorite check out people at Subway or Casey’s or Wood’s in Pocahontas, that not only go so far not to judge, but go out of their way to make an effort to embrace my child, involve him in conversation, to make each and every trip he makes out of the house as good as it can be. The ones who see a little boy, trying his hardest to not let the outside world throw him off-guard, as he looks for the enjoyment of a snack of his choice or a new book.

So it’s my choice. I won’t rant about the downfall of society, the human race, but instead embrace the differences I have seen along the way. I can’t help but wonder, does the yearly newspaper article on Elijah each April in Pocahontas help make a difference? Does the awareness walk and dinner in Storm Lake help direct those eyes to understanding, instead of judgment? It can’t be pure coincidence that our child’s most valuable social experiences come in communities we have focused awareness campaigns each year.

I guess it all comes down to the fact that nothing worthwhile is always easy, there’s going to be bumps along the way. But it’s all about perspective. It’s not about how far we have to go, the people along the way who just don’t get it…it’s about how far we’ve come, about the change that is taking place before our eyes. It’s about ERAAAP, a community of world changers with a confusing name…the ones who are not just creating awareness, but we are creating AWARENESS that generates ACTION. But most of all, it’s a project…a work in progress. It’s about a glass that is half full, full of love and understanding, a glass that has plenty of room for more. At the end of the day, there’s always room for more of a good thing.

NEVER.

The words came early and often, but there was one that always seemed to stand out.

NEVER.

"Your child has an abstract mind; he will never play imaginatively like “typical” children."

"Your child will never have a normal conversation with you."

...Among others.

As a parent on the journey with a child on the autism spectrum, often times at first you are holding on to the words of the so-called professionals, just for a glimpse of what the future might hold. What I’ve learned, is when it comes to autism, the professionals are far from experts. If they were, they would know what Elijah’s preschool teachers know, “If you know one child with autism, you know one child with autism.” That just because you have a four year degree, you have NO grounds to dictate the future of a child.  That autism is every form is different, that there is no manual, no guidebook, nothing that could ever dictate what will or won’t happen for a child on the spectrum. Anything you try to say about the future is nothing more than an educated opinion and should not be shared as fact!

But I do have to thank these doctors, because the terrible advice and forecast of the future, sure has made it a little bit sweeter when Elijah has developed these skills. By the age of five.

If I’ve learned anything from these “professionals”, it is that I will never listen to the word never. And that’s the only time the word never really applies. As parents, we are told to educate our children, if you want something enough and work hard enough to achieve it, anything is possible. For myself, my five year old has done a tremendous job of reminding me this. ANYTHING IS POSSIBLE. (Oh, and never say never!)

The power of community

The Power of Community

How did we get here?

When Melissa and I started this journey with Elijah, we made the difficult decision that not only would we strive to do everything we could for Elijah to make his life the very best it could be, but we would use our voices as parents to share the story of Elijah, in hopes that we could make the world a little better as well. Our goals back there were pretty simple…we just wanted our family and friends to understand autism, support Elijah, and raise a little money for the cause if we could.

A funny thing happened along the way. One by one, our family and friends began to not only embrace Elijah’s story, but they shared it. One event the first year turned into three the second, a handful the third and even more now going into the fourth year. People weren’t asking, what’s autism, but rather, what can I do to help? What can I do to make a difference? That little snowball of awareness started to grow.

It is such a beautiful thing, to sit down in January each year with Melissa, take a deep breath and utter a collective “here we go!” Months of planning go into our events, from coming up with a concept for our t-shirts (which Melissa has developed a heckuva knack for!), organizing all the details, and then executing it all. But truth be told, it’s becoming the most wonderful time of the year for us! Because whether it’s the front of Matt Buyten’s jersey at the X Games, the strap of Cody Gilmore’s goggles at a Supercross, a sea of a hundred people wearing blue walking in Storm Lake, or just a good friend with the blue shirt on at the gas station on a random Monday, it still brings a smile to our face each and every time we see our logo. How could we not feel the love, and be so excited to see what will come each year? People with good hearts and great actions still exist…and we are so darn lucky to have so many of them in Elijah’s community.

As another whirlwind April awaits, I can’t even comprehend how we got here. I like to think I have big dreams and nothing overwhelms me, but I am truly mind blown. I’m humble enough to remember the first t-shirt fundraiser we did, and the fact we doubled that number a couple times last year. That what started as a group numbering thirty some at the first event, will likely reach out to tens of thousands this year worldwide!

Growth like this doesn’t happen overnight, or with just two people trying to raise awareness. Somewhere along the way, this little dream became so much more…it was no longer Melissa and I sharing our little Elijah with this community, but it was this community that started to say, this is why we are here, this little boy, and this is OUR story. And because of you, there’s no telling where we might go, no dream too far fetched, no future that seems impossible.  (JR)

What your blue can do... (what's awareness really mean?)

Awareness...it's such a tricky word. I know often times people are thinking, what's this guy talking about, autism awareness. I've heard of autism, what else are they looking for? How can wearing a different color of shirt really make a difference? I've never really had the opportunity to explain it, my concept of awareness, and how it fits the big picture. Here's what I think.

Nearly four years ago, I was a first time parent and had little knowledge of the word autism. Like any normal human being, I had a very predetermined definition of what I thought autism was, and what it would mean for a person to have autism. Oh how little I really knew! Let me tell you, when I heard the word AUTISM being mentioned in regards to my little Elijah, it wasn't ice cream cones and rainbows that were dancing in my thoughts! Was I aware of autism? I sure thought I was, but I was far from understanding of what autism is!

A lot of days have flown off the calendar since that time, and there has been a tremendous number of family, friends, and supporters who have been on this journey with our family since day one. Each and every year, the more we learn about Elijah blows my mind. Notice I said Elijah there, and not autism. That's the first rule of awareness...we must share that if you know one child with autism, you know one child with autism. There are no two children on the specturm that are the same! But that's a post for another day, back to awareness.

Awareness is truly our little groups way of paying it forward. It all started with this little boy, who God blessed us with into this awesome little group. We were given a message, here's your boy, he has autism...now what are you going to do? From day one, we've said that Elijah was given to us because he is a special individual who is going to change the world in a way that Melissa and I could only dream of doing. So the first year, we started a little walk team, and we put in a couple miles in Des Moines with shiny yellow shirts and a pair of bright blue eyes on the front, leading the way. The next year, it grew. There were new events, a barbeque, a pack the park rally in Pocahontas, and a walk and dinner in Storm Lake. The community grew. A record team for the walk in Des Moines.
Then a third year. A bigger walk and dinner in Storm Lake, a bigger pack the park in Pocahontas, more newspaper coverage, another huge walk team in Des Moines, and then live TV with Step Up for Autism at the ESPN X Games.

How did this happen?

One word. YOU. You took the initiative, the challenge to share Elijah's story with your friends, neighbors, any one you came across in April with your blue shirt. But April wasn't enough. You wore your shirts more, and more people asked what it was all about. So you told them. And then they took the initiative, to join Elijah's Project. And a funny thing happened along the way...not only did we all become aware of autism, we became aware of Elijah. Of one story on the spectrum. And along the way, we've had so many other stories come our way. Stories of a bright future for children on the spectrum. Stories of people helping people.

I don't know what the future holds for our family, for that bright blue-eyed boy who warms so many hearts. But I do know that wherever he goes, he will do so in a world full of love, of support, of awareness, and most of all, understanding...because one by one, each of you have taken the challenge to raise your voice, even when Elijah was searching for his, to tell the world that autism isn't something to be feared. You've told the world, we will learn about autism; we will learn to love children like Elijah with autism. And we'll be damned if we don't do our best to make this world the best possible world for them to grow into, to be productive in, to succeed in. To me, that's what awareness is...awareness is tomorrow, an unwritten page in the book of life. And because of you, every tomorrow looks a little bit brighter for my little Elijah. (JR)

Starting by looking back...

Well, after a lot of consideration, I've decided to enter the blogging world. Here you'll find our thoughts and such as they pertain to the world of Autism and our journey with Elijah, as well as his youngest brother Ryder. I think you'll find the posts informative, and most of all entertaining. To start things out, I wanted to share one of the first things I wrote about Elijah's diagnosis, in March of 2011, just under a year into our journey, reflecting on the upcoming Autism Speaks walk. Looking back just less than two years later, it's awesome how true these words ring true still today. More than ever, we just have to keep calm and believe, one step at a time... (-JR)

Why I Walk, by Jeremy Riesenberg, March 2011

I walk for my son, Elijah, who was diagnosed with Autism in 2010 at the age of 2.

I walk for the sleepless nights in the early days of diagnosis, wondering what the future would hold.

I walk for the relentless commitment to the cause by my wife, who spent hours upon hours researching, reading, reaching out, working for a better future.

I walk for my son, Ryder, who does not have autism…, he who loves his brother with the purest of hearts.

I walk for my boys, who sometimes play together, sharing a laugh or a smile.

I walk for more laughs and smiles, shared by us all in the future.

I walk for my son, Elijah, who will enjoy a future that will see him rise to the best of his abilities, thanks to the dedication of so many.

I walk for the peace of mind, knowing that this was my calling in life…that I am here on the Earth for a greater good. I walk for the service providers who have blessed my son with their passion and commitment to his cause, and the reaction they share with us at every breakthrough.

I walk for the breakthroughs…no matter how small or unexpected, no matter how long and difficult the path forged.

I walk because I can. Because I have a voice, and I refuse to accept a life lived any other way.

I walk because of everyone that my precious blue-eyed blonde has come to represent. The family, the friends, the support group…sharing the breakthroughs and the battles just the same.

I walk for the future. I walk because sometimes, ordinary people doing extraordinary things, come together for a common cause to change the future, and in doing so, change the world.