#ReliefFund - Why it is SO Important to our Families

What is the Kinera Foundation Relief Fund?

As you know, we received that important letter from the IRS, determining Kinera Foundation a 501(c)(3) Public Charity, last week. I am still riding on that high!! This is so important to our Foundation because it will allow us to accept donations, or in IRS Terms "bequests, devises, transfers, or gifts", all tax deductible.

In celebration we are hosting our very first fundraiser, The Kinera Foundation Inaugural Virtual 5K. All proceeds from this event will benefit the Kinera Foundation Relief Fund.

I wanted to take a moment to explain why the Relief Fund is so important. When C was diagnosed, it took what seemed like an eternity to #1 understand how to go about seeking services for him, and #2 get him in for an appointment. Having a child with special needs changes the way providers bill insurance, and what may not have been a covered cost pre-diagnosis now is, BUT you have to figure that out, through a lot of trial and error and many denials from insurance. Then once you have the insurance thing figured out, you have to wait for an appointment to open up. Many of the specialists we were referred to, had 6-18 month wait lists. AND, that is only if your child has a diagnosis with a billable code, that any of this even applies. I have met more families than are on my two hands, who don't have a primary diagnosis that qualifies them for Habilitative (Speech, Occupational, or Applied Behavior Analysis Therapies) and other services/ treatments, and therefore they must pay out of pocket.

The year that C was diagnosed, our family spent close to $15,000 out of pocket in medical expenses. We pay for our health insurance out of pocket because Kell is self-employed. Our health insurance has a high deductible, so when I would get approval from the provider and our insurance that a service was covered, I would not pay for the appointment at the time of service. I knew that we had the deductible, and would request to make a payment up front, to reduce the cost of the bill, but was many times denied because of the way the provider's billing system worked. 30 days later we would receive bills for $1200, $1600, $750, etc. and they would be due in 30 days. Seeing the bills pile up and trying to figure out how we would pay was overwhelming. In years prior, our deductible was spread out over the year. These bills all came due within a matter of 60 days. Very few families can financially make this work.

When we started our strategic planning for Kinera Foundation, this was an area I wanted to address. They say that you really can't financially plan for a child - you just make it work, but it becomes more difficult to "just make it work", when that child has a significant health care need. I had a mother of a child without a billable primary diagnosis tell me that she paid $13,000 out of pocket for genetic testing to be done, in hopes that they could determine a better diagnosis for her daughter. ONE TEST - $13,000!!

The Relief Fund was established to help families under financial stress - I can't name a single family, regardless of income, who has a child with a special need, and does not stress about financial stability. In addition, when you are putting this kind of money out to help your child with a special need, discretionary funds fall short. What about the siblings? I have heard stories of parents having to choose therapy over recreational activities for their typically developing child. It is a terrible position to be in - we have been there. The look of disappointment and resentment leaves a heavy cloud of guilt on your conscience. 

There is an application process for the Relief Fund, we do not just hand money out to anyone requesting it. In fact, I am very proud of the application process. We release the grant quarterly, and the funding per quarter is based on the funds raised in the  previous quarter. Funds are paid directly to the vendor or service provider, to ensure the money is being spent for which it was allocated. We have a committee of 3 fabulous community members who report to the Committee Chair, a member of the Kinera Foundation Board of Directors. The Relief Fund Committee has no ties to the Board of Directors, or the Special Needs Community, and therefore is a non-partial entity.

Applicants can apply for the grant to cover many services, including:

Speech Therapy - Costs not covered by Insurance
Occupational Therapy - Costs not covered by Insurance
ABA - Costs not covered by Insurance
Hippotherapy - Costs not covered by Insurance
Therapeutic Riding
Advocacy
Medical Devices - Wheelchairs, ramps,  braces,etc. - Costs not covered by Insurance
Assistive Technology - Costs not covered by Insurance
Physical Therapy - Costs not covered by Insurance
Behavioral Consults
Camps
Social Activities
Emergency Funding, i.e. rent relief, electricity - With proof of financial hardship

Why am I giving you this information?

There are so many families struggling, so many who do not qualify for assistance, but need help. There is a gap that needs to be filled, and we want to help fill that gap. Families who's annual salaries are too great to qualify for help, but still struggle financially, families who don't have a diagnosis which covers the therapies and services their child desperately needs, families who have to choose treatment for one child over recreation for another... These families need help, and have very few resources to turn to.

By supporting Kinera Foundation, by running for a cause, or simply making a donation of your choosing, you are making a direct and positive impact on a family in your community. When we say ALL proceeds from the Kinera Foundation Inaugural Virtual 5K benefit the Relief Fund - we mean ALL. We chose a virtual race because the overhead and planning costs are minimal, allowing us to ensure maximum funding for our grant.

While it is Autism Awareness Month, I don't ask you to run to raise awareness. I ask you to run on behalf of the kid next door with ADHD, your cousin with Intellectual Disability, the child in your son's class with Epilepsy, and the little girl who doesn't have a diagnosis, but has significant delays and medical needs.

For more information on the Kinera Foundation Virtual 5K, or to register:www.kinera.org/virtual-5k.html
To Donate: www.kinera.org
To learn more about the Relief Fund and how you can help: Christy@Kinera.org

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.

Let's Stop Using Fear as a Means of Awareness

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


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

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

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

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

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

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

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

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

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

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