Posted by: Joan Graves | February 11, 2015

Praying for Someday

1970973_10201896756220493_8783179060740676673_nPeople say that God gives special needs children to special parents. I believe that. I see the number of people who kill their children, either in the womb or after birth, simply because they have special needs. Some are so terrified of a special needs child they are willing to gamble with their child’s life and the lives of others when they forego vaccinations in fear of autism. Yet, in knowing all of that most days I don’t feel special at all.

My days are filled with homeschooling a non-verbal child, battling chronic constipation and ear infections, trying to teach him to shower on his own, pureeing food because he can’t chew, a parade of doctors, therapists and other health professionals, medication, vitamins, educating myself, praying that someday he will be better and always searching for the slightest improvement. It’s the tiniest of things that provide the fuel to keep going.

Life with a special needs child is a unique rhythm of life. It’s a raging battle of promise and hopelessness, a song of celebration and mourning and a mesmerizing dance of fire and rain. It cannot be compartmentalized into the smallness of mere words. There’s unparalleled success, tragic downfall and the mundane of the middle. What sustains us through it all is our belief in God.  10847201_10202680243327181_8377837703673347975_o

I firmly believe special needs children are closer to God than anyone else on earth. I cannot escape the notion that they have the knowledge of God and the relationship with Christ that the rest of us long for; whether we acknowledge the need or not. These special kids have a special place in God’s garden of love. That’s why as special needs parents we learn more from our kids than they do us. We see the strength in them others see as a disability. We see the sensitive heart in them that God longs to place in all of us. Yet, others may only see emotions out of control. We live the greatest of human experiences in the ever present struggle, love and under-dog victory that people pay money to just glimpse in a darkened, isolated movie theater.

There are days we need a hug, a gentle word or the smallest of encouraging smiles. But always we want you to remember us in your prayers. We know prayer changes things. We get up every single day dependent upon that simple truth. When we’re trying to teach a skill for at least the ten thousandth time with no evidence that we’ve made the least bit of difference, we need your prayers. When day after day we pour all we have into our kids with the overwhelming feeling that it is in vain, we need your prayers. When we must not only watch our children suffer but often be required to perform medical procedures or allow them to be performed in the full knowledge that it will be traumatizing to our child, we need your prayers. 10943786_10202677890108352_4474115440451918616_o

But most of all we need you to pray for Someday. Because we believe that Someday God will bring forth all the knowledge we’ve poured into our children of which we’ve never seen a positive result. Someday strength will come to muscles which have been lax. Someday light will come to a part of the brain that has been dark for years. Someday all our struggles will be worthwhile because we will impact the world for the greater good of God. Someday. But until that glorious day when we wake up to our Someday we need your prayers today. Because until Someday all we have is This Day. And only prayer can turn This Day into our Someday tomorrow.

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Preemies come with all sorts of challenges that sometimes last for years or disappear in months.

Posted by: Joan Graves | September 5, 2013

More Or Less

Everybody knows how hard parenting is. We grow up hearing about from our parents but don’t understand until we turn into them. After having my first son I thought, “Pffft. What are people talking about? This parenting thing is a breeze. What a bunch of whiners.” Of course, I didn’t know my child was autistic. When the doctors told me, I had little light bulb moment. “Ohhhhhh.” I thought about how quiet he was, how he preferred to play alone and how he never got into stuff. I looked at the doctor and said, “Yeah, see I just thought I was raising a great kid. Totally missed that autism bit.”

 

Raising special needs kids is so far removed from regular parenting it should have an entirely different title. I’m ra

 

ther fond of Superwoman or Odds Defyer. The problem is rarely do I ever fell I live up to such a title. Now, before you go, “Awww”, and feel sorry for me, I’m not saying I’m a crappy parent. It is just that with special kids there is ALWAYS something more to be done, said, thought, yelled about, or cried over.

 

I’ve always thought it odd how some people look at special needs kids and see less while the parents of the kid see only more – more doctor visits, more therapy sessions, more stress and more pain. Most of the time our pain is emotional, but when it is physical it is game changing. How am I supposed to help my kid be more when all I have is less?

 

In my lower back, I have a tarlov cyst, at least 2 bulging discs and spinal stenosis. As the spinal stenosis continues to narrow my spinal column, pain is referred to other areas such as my side. Now, all the moves I have perfected to avoid back pain have to be rethought to avoid side pain.

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Too many times getting to a standing position causes pain so intense sweat breaks out on my forehead and literally sucks the air from my lungs causing me to feel faint. I’ve had episodes of standing up only to have a massive pain wave drop me to my knees. Some days are better than others are but I cannot recall the last time I had a day without pain.

 

For a girl who was once extremely active and independent it is hard to accept my limitations. Emotional pain adds to the physical when I’m forced to cancel, give up, or leave something I enjoy. It takes the will of God to make me sit or lie down while others do things for me.

 

It’s easy to give in to fear and despair, thinking the days ahead will only be worse. Yet, when I feel I’m drowning in a sea of hopeless, unending pain and think my quality of life is in a four-alarm nose-dive, I remember one simple truth. There is someone, somewhere on this earth who is actually praying to have a life such as mine. I need look no further than the next room to see that proverbial wisdom become reality.

 

My son DJ cannot speak or chew. He walks with a quirky gait but doesn’t come close to running. He is not potty trained and needs assistance with every part of his life. I would imagine he would like to have the ability to move that I do. I am sure those suffering from paralysis or limbs would trade places with me. When I get depressed about the things I am missing with my kids, I imagine how parents who have lost a child would celebrate just knowing their child walked the earth.

 

When I tally up the end of each day, my mind reminds me that I am giving less to more and more things. A desire to do, be and say more nearly overcomes me as I think my dreams of life need more of me. I have to stop the more-less debate and remind myself that my life is nowhere close to what I’d like it to be but it certainly isn’t as hard as it could be. Moreover, when I look into the sparkling eyes of my special needs little boy I see how less is so much more.

 

 

 

Posted by: Joan Graves | August 4, 2013

This Is What Mending A Broken Heart Looks Like

For nearly 15 years, we have taken our family vacation at Cherokee Lake. Each year I take DJ to the dock and we watch whatever happens to be taking place on the water at that moment. I point to the bridge and show him the cars; we watch the boats,’ I bounce around all silly as waves rock the dock, and anything else I find to show him. DJ cannot speak but I know he understands so I use every available moment to try to teach him something new. I treasure every second we spend on that dock together. I know DJ enjoys the moments also because his eyes have a way of saying what his mouth cannot.

This year while I was jabbering away to him, pointing at this and that I suddenly felt his little arm go around my neck. I was so surprised I looked behind me certain someone had moved his arm for him. The only time DJ has ever put his arm around someone has been in a sensory or playful moment and he is getting them in a headlock. This was entirely different. This was new. DJ laughs and has a personality but he has never initiated affection. EVER.

For a second, I sat there quietly not moving out of fear of losing this sacred moment. When my husband, Steve, noticed and said something, DJ’s arm slid down my back as he turned to look at his dad. Then in a moment that seemed too good to be true, I felt that little arm go right back around me. To make certain we knew the moment was special to him as well; he emphasized it by leaning over and giving me a kiss.

In that space of time, everything else fell away. This is the child that a doctor once told me would be nothing more than a “blob”. She said he would never speak, express emotion, or even hold his own head up. She predicted newborns would have better skills than DJ. I vividly remember sitting alone mulling over the doctor’s words and wondering if I was delusional for rejecting her opinion immediately. I never allowed her grim announcement to take root in me. I knew that was not DJ’s future.

It has taken 12 years to get from that miracle-choking hospital room to that initiated expression of love on the dock. We have had a very hard road but not as hard as others. His chronic hospitalizations dealt incredibly harsh blows to my heart. While Steve worked to support our family, I was always at the hospital holding DJ down for blood draws, shots, IV’s or an endless stream of testing that would again reveal nothing. I gave him enemas that always triggered profuse vomiting leading to dehydration and a hospital admission. Despite knowing he needed them I always felt as if I made him sick. He may have been constipated but he was not hospital sick until I would give him the enema. It was a hell from which there was never an escape

I did those things because I knew it had to be done and that being a mom means sometimes you break your own heart for the betterment of your child. DJ, however, did not understand all of that. All he knew was he was in pain and I was not only letting someone hurt him I was helping them. To him, it was the ultimate parental betrayal. With nurses repeatedly sticking his tiny little arms with needles in hopes of finding a vein, DJ would look at me with tears soaking his pillow and eyes that fairly shouted, “Why are you doing this to me?” Those hurtful looks seared my soul and pierced my heart in places so deep I did not even know existed until they were breaking apart.

On that dock, with his little arm and kiss all of those shattered pieces of my heart flew in reverse and made me new. Steve, somehow, managed to photograph the moment and posted it on Facebook. I have been absolutely floored by the response. The last time I checked there were over 800 “likes”, 54 comments, and 17 “shares”. God mended my heart through DJ and He makes it sing through each person on Facebook who shows they are invested in our life.

The picture below is only a snapshot of our life journey but no doubt is far more valuable than a few thousand words. In all the things we have gone through, lost in a maze of broken hearts, we arrived at this divine moment that overrides everything else. This picture gathers the ashes of our life and turns them into a beautiful display of love, perseverance and the very fingerprints of God. Thanks to everyone who has celebrated this moment with us

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Posted by: Joan Graves | March 30, 2013

P3 Easter Is Special Indeed

What an honor to have these amazing people be a part of my life.

Posted by: Joan Graves | June 5, 2014

Special Olympics & An Even More Special Football Coach

coach & a boyAs I sit here listening to my husband help prepare Colton, our son with Asperger’s Syndrome, for his first Special Olympics appearance I’m already starting to tear up. We may not live in the happiest place on earth but Colton Royce Graves is one of the happiest people on the planet. That wasn’t always the case.

Not too many years ago Colton was a sad, angry, friendless kid trying to survive cruel middle-schoolers. He was tormented for a medical condition he can’t control. He was desperate for a friend and a place to fit in. The other kids knew that and often pretended to be his friend for the sole purpose of humiliating him. They would pretend to be his friend only so they could humiliate him by proclaiming to the entire cafeteria that they would never be the friend of the “loser” named Colton.

By his freshman year of high school we had to make changes. I felt that a friend or two would change things for Colton. I also knew kids relate by common interest. My thought was that if Colton got involved in a sport or organization that he might find a friend. I inquired about Colton helping out with sports. I was thinking he’d be the guy that puts away all the basketballs at the end of the game.

Imagine my surprise when I’m told Colton needs to be with the football team. My initial thought was, “Holy crap! Football players? They will punt him like the ball.” But I was assured that the coach would have none of that bullying nonsense. From what I was hearing Coach Paul Columbia was fair, honest, sincere, caring and the most notable citizen in the entire county. Coach Columbia was a former NFL player with a passion and intelligence for winning but with a heart designed for kids. I mockingly said, “So, he’s Jesus?” To my utter shock the reply, in all seriousness was, “Pretty close.”  I wasn’t sure whether I should be scared or scoff.

Good thing I didn’t scoff because Paul Columbia was far more than I could have ever expected. I didn’t formally meet the man until Colton had graduated but I didn’t need to. The fingerprints of Paul Columbia were all over my kid. Suddenly, the boy that had no friends received party invitations. The kid once mocked was sought out for his humor and wit. The boy who was once tossed away became valuable to the team; not because of any great play but because Coach said ALL people are to be valued and respected. And Coach not only said it, he was a living example for those boys. 

Coach Paul Columbia invested four years into my son and harvested a lifetime of respect, joy and confidence. Colton never would have had the courage to even remotely consider a competition of any sort, let alone one as huge as Special Olympics. But tonight, the Pre-Coach Columbia Colton exists only in the haunted memories of my traumatized mind. There is no sign in the man that Paul Columbia made from the beat down boy that came before him.

Paul Columbia you will always be a gold medalist in love, acceptance and genuine human compassion. Thank you for that.

Posted by: Joan Graves | June 1, 2014

Disabled Before God

imagesThere are laws forcing public places to be handicap accessible. But what does that really mean? It’s one thing to put in a ramp but entirely different to actually love the disabled.

Few people stop and consider the mentality of a disabled person. Many can’t stop looking at the requirements of the outside in order to discover the inward human being. They have not an inkling as to what it feels like to always be relegated to a back or side door. They don’t know the weight of feeling like a burden because a business or organization is forced to make things accessible. Unless you’re life is deeply immersed in the disabled, the mindset is that as long as there’s a ramp all is good. They cannot comprehend the fear and anxiety of knowing you are in a place wholly dependent upon the mercy of another because you can’t get out on your own. There’s no way to explain the vulnerability experienced on a daily basis by the less than able-bodied.  

Today I taught preschoolers about how Jesus’ Disciples, Peter and John, healed a paralyzed man. I took them outside so they could run, jump, hop, skip, and walk on the legs with which God blessed them. We discussed all the things they would not be able to do if they couldn’t walk. In Biblical times paralyzed individuals were outcasts and beggars. Sadly, today, even with all our technology and education, a paralyzed individual is still very much an outcast.

While public places are forced by law to be handicap accessible they aren’t forced to care for those who need accessibility. They build a ramp on the side or rear of the building and call it a day. But what about the emotional impact on the person always being forced to enter through a different door? Ask any African-American, old enough to remember, how they felt being forced to use a different door, go to a different school or be barred all together. Ask them how constantly having their “difference” put on display negatively impacted them and their family for generations to come. 

For those in need of accessibility they must constantly cope with the feeling of being a burden. Most don’t ask for better because they already feel guilty for organizations or businesses having to be put to extra cost for them. Many limit their public outings because they would rather stay home than endure the humiliation of always having to search for the back elevator or enter through less than desirable doors. The handicapped more often than not don’t get to enter into main areas. Ramps and elevators can be unsightly so they are hidden in areas where no one else goes. Forcing the disabled to use those hidden avenues sends the message that the disabled is also unacceptable, unsightly and meant to be hidden. 

There is a reason that God provided multiple examples of paralyzed people in the Bible. I believe it’s because God is telling us that adhering to the law of accessibility is not enough. We must adhere to His law of love, especially with the disabled. It is up to God’s people to lead the way and fling open the front doors to the disabled. It’s our responsibility to put the disabled’s needs ahead of our own, despite the fact that their numbers may be small. God’s children need to be setting standards not simply adhering to them.  We can make every building accessible, but until our hearts are handicap accessible we live disabled in the eyes of God.

Love-Your-Disabled-for-Website

Posted by: Joan Graves | May 13, 2014

Get Your Metabolic Dr. For “Zero Down & $99 A Month”

1466226_10200482691349755_1303709825_nMy son DJ, was diagnosed with Mitochondrial Disease almost three years ago.  Normally, he would have been immediately sent to a metabolic doctor to confirm the diagnosis and begin a plan of treatment.  However, the only two cities in KY, Louisville and Lexington, with a metabolic doctor decided nearly simultaneously to no longer have one.  I thought it was a hair-brained move at the time on both their parts but there’s just no reasoning with the executives heads of hospitals.

Everyone knows the place to be for mitochondrial disease is Cleveland Clinic.  Hands down they are the best of the best.  The “father” of mitochondrial disease is housed there and they have an extensive research department.  We couldn’t get DJ in there because getting rid of metabolic doctors wasn’t Kentucky’s only stupid healthcare move taking place.  At the same time Governor Steve Beshear  Beshear decided to bring in new Managed Care Organizations (MCO’s) to manage Kentucky’s ever growing Medicaid and disability healthcare.  On the surface it seemed like a good idea but the companies selected (including one which was under federal indictment for Medicaid fraud) were less than stellar.  Add to that the shambles KY made of installing the MCO’s and it’s easy to understand why no one outside the state would accept any of Kentucky’s MCO’s.  To this date, Cleveland Clinic still refuses all MCO’s but currently accepts Anthem BC/BS which has recently become a KY MCO.  

It is a shame what politicians do to those most in need of healthcare.  It’s easy to talk a good game and spin a good PR campaign but it takes real men and women with guts to actually take a walk on the other side and see the reality of their decisions.  Governor Beshear’s actions appear to not consider my son or others like him. Instead, he took a cue from President Obama and decided he would force his healthcare agenda through whether the people wanted it or not.  That negligent, irresponsible renegade attitude has cost my son nearly three years of healthcare that could have improved his quality of life and reduced his overall healthcare costs.  Instead, he has been caught in the middle of a political power struggle that I have taken very personal.

Wildcat FordEnter Man-O-War Ford, now known as Wildcat Ford.  Yep, that’s right.  A car dealership, intervened and cleaned up the mess made by poor decision making on the part of hospital administrators and politicians.  Today, DJ had his first referral to a metabolic doctor, Dr. R. Stephan Amato.  When I Googled Dr. D’Amato I discovered that he was at the University of Kentucky on the “Man-O-War Ford Professorship”.  That basically breaks down to mean that Man-O-War Ford donated a substantial sum of money to UK Hospital for the establishment of a metabolic doctor. 

While I am unclear about the specifics of how this played out what I do know is that because of the professorship my son will get the medical attention that is long overdue him.  As a mother that’s all I need to know.  As an advocate I encourage everyone who reads this in Central Kentucky to visit Wildcat Ford for your next vehicle and invest in the lives of kids like my little boy.  374180_2066104312162_537175641_n

Posted by: Joan Graves | March 25, 2014

The Magic Of Service Dogs

The Joan Zone

The Magic Of Service Dogs

This past November DJ’s service dog, Duke, had to be put to sleep.  It’s been extremely painful and hopefully one day we will have another dog.  Because of our loss this story touched me greatly.  I hope you enjoy it.

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Posted by: Joan Graves | January 12, 2014

dear angry restaurant lady…

We all know what this is like.

Tales from the Preacher's Wife

Your angry looks are not going to change the behavior of my children, nor will they change the fact that there are ten people sitting at the table next to you, trying to have lunch.  Honestly, my children are behaving rather well.  My daughter has brought a friend along, so the seven children sitting at the two tables the servers had to move together are squeezed together tighter than sardines.  But they are eating their food, having good conversation, and enjoying their lunch.

Your glares, however, are noticed by their parents.

Yes, we have six children.  And yes, the three year old and the five year old (who has special needs, not that you care) are clinking forks together, talking rather loudly, and hiding under the table from time to time.  And yes, the six year old (who is rather emotional and has overcome shaken baby syndrome, not that you…

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Posted by: Joan Graves | December 18, 2013

Sensory Stories – Inclusion in Every Way

Editor’s Note: Guest Blogger Joana Grace is a special education and disabilities consultant in London, England. Joana writes educational resources for organizations and individuals seeking to connect with individuals with various types of sensory processing disorders. You can find her work on her website http://jo.element42.org  Please visit her site and let her know you saw her on P3 and how much you appreciate her efforts to erase the sensory lines between us.

sensory storiesSensory stories are a gorgeous resource originally created for individuals who have profound and multiple learning disabilities (PMLD). Sensory stories facilitate wonderful things for individuals with PMLD such as the ability to express preferences. With the simple ability to express a preference or opinion comes a better way of life through the personalization of care for individuals using sensory stories.

Researchers have connected an improved educational and social experience for struggling students after using sensory stories. Students connect with the stories allowing them to feel a little braver, safer, and willing to try things they would ordinarily shun. Through retelling the stories, students build predictability and a feeling of security, enabling children to interact with daunting stimuli or giving them the opportunity to rehearse their reactions to previously untried stimuli.

If you have ever seen a book with swatches of fur fabric, or a noise button in it, you know how motivating basic sensory stimuli can be. The stimuli in a sensory story has a far greater impact;  there’s tears running down your face, the whole world turning red, the smell of lemongrass in the morning, the sound of thunder, and the taste of cold gruel (to name just a few from some of my recent stories).

Sensory stories are fun for everyone but for children with ADD they hold specific significance in helping generate an engagement with literacy, the child may have previously been denied. Sensory stories have a unique ability to hold the child’s attention and will thereby help build up concentration. Having something to touch or sniff gives an individual more to hang their attention onto and makes focusing easier. I have used sensory stories in mainstream nursery, primary and secondary schools, as well as special schools and even a couple of universities. They’ve been a relevant and enjoyable learning experience in all settings.

Look at the role stories play in your own life: your identity is partly formed by stories you were told about what you did when you were little, your family history, stories from your community and religious stories all combine to give a sense of where you belong in the world. I am of an age where if I quote a line from Friends most people my age will know what I am on about; that we shared in those stories is a connection between us. Stories teach us right from wrong, feed our dreams, give us  aspirations and inspirations, and as we progress through life we build new stories – my partner sometimes argues for doing a particular thing with the rational “it will make a good story.” I’ve just begun a collaborative project with a nurse who works with dementia patients. Her clients lose their life stories and with them, the knowledge of who they are, and who their loved ones are. Stories are so important: they form our identities and our lives.

Now imagine a life where stories are not shared with you, or where you cannot share the stories inside you because of processing difficulties.  I loved watching Friends and sharing that experience with others. But I also remember how when my well-read father would watch Friends with me. Suddenly, I would see the program through his eyes and it seemed silly. Yet, I have been told that at age two my favourite book was the Hobbit, my dad’s personal favourite. I wonder if that has to do with my precocious taste for literature at an early age or my father’s love of reading it to me. For a story to be truly inclusive, everyone has to want to hear and process it.

We all want inclusion. We want disabled access to different locations. We want understanding of “melt downs” in public. We want labelling in Braille. We want access to education and support.  We want so many things. Sharing stories is a beautiful way of including people, it’s so simple, and we’ve done it forever from huddling in a cave around a fire, to gazing into the darkness in a cinema, we love stories. My sensory stories can be useful, but most of all I hope they will be interesting, and fun, and more than anything I hope they will be shared.

The above is just the briefest of introductions, I could write all day on sensory stories, (and if you go to my website, you will find more there). Today, what I hope to share with you is a little more of the why. Why is it so important to share stories? How do stories support inclusion?

I currently have 6 sensory stories for sale:

The birth of a star – tells of the birth of a bright blue star in a stellar nursery.

Cocoon – is a meditation on rest and rebirth following the life cycle of a butterfly.

Puddle – is a poem about a boy who dives into a puddle and has an adventure.

A white kite – is about a girl who struggles to find a place to fly her kite: it’s a simple story and an allegory for Victorian feminism.

Princess Esme – is a children’s story about a Princess who escapes the palace to talk to the gardener and pick strawberries. (This story was co-authored with Fantasy Realist author: Gwendolen Benjamin)

The Woods – is told to the beat of a person’s footsteps as they walk, and run, through a wood.

A book of 5 stories and supporting information is due to come out late next year, published by Jessica Kingsley.

You can see them all my stories at http://jo.element42.org, and you can learn a bit more about the adventure of their creation there too.

Posted by: Joan Graves | November 21, 2013

LOVE STORY … a story in pictures you won’t forget easily

Disability does not meet incapability

Words To Vomit

For more info on this loving couple, visit the official website: http://www.taylormorris.org/

WOW !!

LOVE STORY … a story in pictures you won’t forget easily

AND IT BEGINS . . . .

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If he is a hero………..She is an angel

God has blessed us all, for he has put Marines, Sailors, Airmen and Soldiers here to protect what we believe in!
PLEASE DO NOT HOLD ON TO THIS OR PRESS DELETE. SOMEONE HAS TO HOLD OUR COUNTRY IN THEIR HANDS. SEND THIS ON, AND ON AND ON…
~

It’s the Marine, Sailor, Soldier and Airmen not the reporter
Who has given us the Freedom of the Press.
It’s the Marine, Sailor, Soldier and Airmen not the poet,
Who has given us the Freedom of Speech.
It’s the Marine, Sailor, Soldier and Airmen not the politicians
That ensures our right to Life, Liberty and the Pursuit of Happiness..
It’s…

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Posted by: Joan Graves | November 17, 2013

My Son Colton Has Aspergers & Needs Your Help

Tomorrow is the day that YOU can make the difference. It will cost you no more than 30 seconds of your time but will mean more than $30 million to me. Please help.

 

The Joan Zone

August2010 123After being bullied in Middle School my son, Colton, who has Asperger’s Syndrome found his place in the world by being the water boy for his high school football team. But after graduation, he was again left searching for what we all need, a place to fit in. People with Asperger’s have a natural inclination to turn inward. They prefer to be alone because Asperger’s annihilates any social skills. If left to themselves and without intervention people with Asperger’s can become self-destructive and lead unproductive lives.

Many things can be done for people like Colton and others with disabilities. It is amazing how what may appear to be a minor thing to the rest of us turns out to be life altering to those with disabilities. Sadly, many with disabilities don’t get to give or receive all they can in their communities because they have no way to engage. Often…

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