Wednesday, June 3, 2015

http://www.gofundme.com/i6n3l4

Here is a link to DJ's fundraiser campaign.
Thank you and God Bless.

Monday, June 1, 2015

DJ's ATV Adventures 2015

Wanted to post some recent updates on some things.
We are still fighting for therapy funds for DJ. We are exploring loans etc. Potential sponsors in the off road business. So far we are hitting dead end after dead end, but we are hopeful and keeping our faith. For those of you just seeing this for the first time, we have been fighting for therapeutic funds for DJ's therapy for 3 years now with no such luck. The state of Ohio says this is not therapy and is recreational , therefore they will not fund this at all. All though they pay 50k a year for horseback riding therapy, go figure.. As a father I will fight to the end to make sure he and others like him have a life.
A big thank you to all that have donated to DJ's therapy. We cannot express how grateful we are.
We were able to take him riding over Memorial day weekend and was much needed therapy for him.
We are hoping to get him riding again soon , school is out for summer and he really depends on the summer therapy.
We are seeking sponsors for him to help him continue the only therapy that works for him, ATV therapy.
I / we will continue to fight for DJ so he has a quality of life. I know there are other families that have special needs children and adults that have a unique type of therapy and are not getting any assistance because it is not the " normal" approved therapy".
I feel many people do not truly understand the magnitude of having a special need child whom requires round the clock care, you cant just go out and get a second job, or work more hours, there is no one to care for your child , it is a true rock and a hard place, but God always provides a way. The power of prayer is amazing. It is hard to get on the internet and pour out your heart for the world to see, pride and a strong work ethic always prevents me from really telling the whole story, mainly because we all have problems in life, we are no different and no more special than any other family out there going through hard times.
I still at times get bitter though, I have worked all my life , never asking for anything and always trying to help others, I was raised a giver, not a taker. I have a daughter with severe medical problems, my wife is in and out of the hospital with life long illnesses as well. Still I try to be as positive as I can and still help others when I can. I work as much as I can and still taking care of DJ and the household duties. I write these things today, not of pity or sadness, but in hopes of better days and in hopes that it will help someone else going through their tough battles.
We had several " let downs" in recent times, but I know God has a plan.
In the meantime we will get DJ his therapy when we can and be grateful for the times he does get it.
I thank everyone that believes in this and for all the prayers, thank you and God Bless.

Monday, December 16, 2013

DJ & I would like to wish everyone a very Merry Christmas and a happy and safe New Year ! Here are a few highlights from this year, it was very hard to narrow down the thousands of pictures from this year, but if you have time please watch, some great memories and therapy in here !

Monday, December 9, 2013

A failure in the system

11-26-13
Completely appalled
( feel free to share )

Yet another case of Government garbage......
I have never posted anything personal on here , but this is an outrage !
One year ago today Damon ( DJ ) was offered a separate waiver ( State funded ) to assist him in his needs and a variety of different therapies. This was a blessing at the time, we really thought that this would help him greatly, especially in the winter months. The new funding source ( waiver ) took a few months to get activated and up and running. There was little to no communication to us for the first few months. DJ’s doctors prescribed physical therapy equipment to help his stimulation and I set up an exercise room in the basement and it greatly helps during difficult times for him. I purchased this equipment and submitted receipts for reimbursement like the case worker asked. 6 MONTHS go by with a lot of false promises and problems, countless phone calls and emails, little to no communication to us at all for months at a time. After all this I am told that I will not be reimbursed any time soon , we are being told several stories here. Just think if we waited and did not purchase the equipment that DJ would have had to wait almost a year to get this ! Why was he offered this in the first place then, it is supposed to help him ! So we just chalked it up , he is benefiting from the equipment and after all , that’s all that matters anyway.
Now for the second chapter.....
In early October we submitted a script from his doctors for a track system for his side by side. We were encouraged to do so by many. This waiver is for any therapeutic equipment. ATV Therapy is in his IEP/ISP as his MAIN form of Therapy. Having this track system enables DJ to get out during the winter for therapy and as well the local snowmobile clubs have agreed and want us to groom their trails , this is a huge opportunity for DJ being that it gives the time outdoors and doing something constructive as per his ISP. We were told several times that all was a go and the check for this track system would be mailed directly to the vendor. I contacted the vendor and explained everything and they were great and very happy to help and gave a great price too.
For the last 5 or 6 weeks we were told all is good and to expect the tracks soon. The local snowmobile clubs were going to do an article about this and why it is so important to do this and why it is therapy for DJ. We havnt heard anything so I decided to call the provider handling this and I was told the State denied this claim and purchase because and I quote “ ATV tracks are akin to tires for a van. In addition, ATVs have the potential of being a significant health and safety hazard, which goes against a waiver’s requirements for operation. Please remember that, while the SELF waiver does offer participant direction, it is still a Medicaid waiver and first and foremost, must ensure health and safety. To that end, I would strongly suggest exploring other options for this individual and/or other potential funding resources.”

WHO gives this lady the right to tell me what is safe or not for my boy? This person has no idea of my son and what we do and why we do it. What other “ options “ do you suggest , because we have tried them all !?We have safely been doing this for 13 years ! They pay millions a year for therapeutic horseback lessons to thousands of kids on waivers, in my opinion horses are equally as potentially dangerous as ATV’s, and yes we own horses too......
What a load of crap ! DJ has had this so called waiver for a year now and has received NOTHING, now he suffers because of some person that has no idea what they are talking about and that’s on top of being lied too several times telling us all was good and be on the lookout for the tracks...yea right......
If this therapy that we do is so hazardous then why do ALL of his doctors and therapist encourage what we do then? It is in all of his plans and documentation and has been for 13 on going years now.
What makes me sick about this is that for 31 years of my life I have worked hard and paid my taxes both federal and state and knowing my hard dollars are going to a lot of people collecting disability and food stamps that don’t need it and are cheating the systems, it takes just about everything we can do financially to keep our boy riding and we have never complained about, in fact I am honored to bust my butt to ensure his quality of life and we don’t collect off the government for our needs, we work for those needs, .... but yet my boy is denied a VITAL piece of equipment that he needs to cope with his winter and daily life.
For the first time in my life I no longer want to pay taxes, I always believed, work hard, be nice , pay your taxes and all will be good, I don’t feel that way anymore. The system has failed , I see it in other people lives too, DJ is not the only one being pushed aside, many folks out there right now are going through there own devastations because the system has failed, well at least in Ohio it has in my opinion......
Thank you for reading.
God Bless
https://www.facebook.com/DJsATVAdventuresandAutism?ref=hl

UPDATE 12-9-13

As of today there has been no communication from any of his case workers or the contact at the State level that makes the decisions. I have left her countless voicemails and sent several emails with no response except her only response was 2 weeks in an email saying that she would call me last week, she has not even responded to any of our emails  or calls since then. I cannot believe the level of service our State is providing, seems no one cares whether or not DJ gets his therapy or not. My taxes go towards their salaries and I am appalled that I cannot even get a phone call back. I have to appeal this through their so called system and that will take months, by that time winter is over and my son has suffered. This is a complete outrage and is unacceptable by any measure. I will fight until the end for my son and will make sure as many people as possible here this story so that maybe others will not have to go through this. We are handing over millions of dollars to people that do not even legally live in our country and yet my son can’t even get a portion of his budget from this waiver. Unbelievable !!!

Sunday, April 28, 2013

DJ's ATV Adventures

                                                DJ's ATV Adventures  2013



My name is Darin Frye, I am a husband and a father of three, my wife Kandy, oldest son Dustin ( 25), Daughter Elisia ( 20) and youngest son Damon ( 18).
I was born and raised in Wickliffe Ohio a small town right on Lake Erie. I was adopted when I was 6 months old by my wonderful parents who raised me right and provided a great childhood for my sister and I . Growing up my parents would take us all over the country to camp, ride dirt bikes, fish and go boating. They always had us outdoors and you could say we lived an “outdoors “type of a life growing up. I have had so many great memories as a kid that I could go on forever listing all the great places we visited and all the great things my parents provided for us. We were always doing something outside or in the woods or on the lakes boating.
When I was 19 I met my wife Kandy. We got married pretty fast after we met and she had a son ( Dustin) from a previous marriage . I raised Dustin from the age of 2 and consider him my son. We soon after had Elisia and Damon a couple years later. I am blessed with great kids and a great wife.
When Damon was a baby he did things and had characteristics that were different from our other 2 children, at first we really didn’t think much of it because each child develops differently and has their own characteristics. By the time Damon was 1 he seemed to regress in his speech and other functions and by the time he hit 1 and a half he started to regress to the point that we were concerned so we started to visit different doctors and got many opinions on what may be going on in his life. We soon learned that Damon was Autistic. When Damon was 2 he started early intervention at a local school and program called Broadmore. They really did a great job with Damon and we are very grateful we started him at such an early age. Damon does not have nay speech and is constant supervision, he does not understand reality like a typical child, he does not have any fears or understand that if you run into the street you can get run over by a car or picked up by a stranger etc.
Damon is bright young man now and still has very little speech and still requires around the clock care and constant supervision at all times. 6 years ago we built a custom home to accommodate his special needs and to keep him safe and a happy environment on his terms. We modified many things here to keep his tress levels as low as possible and safety as a priority. Everyday is a challenge for us and him, but we take one day at a time and provide a great life for him.
Damon has always loved the outdoors and anything to do the woods or water and mud!
I myself have been riding dirt bikes and 4-wheelers for over 30 years and when Damon was young he always wanted me to ride him on our 4 wheeler. We used to ride almost everyday for years in our yard and then when we moved to the country it became a serious hobby for him, he is not able to tell us in words how much he enjoys it , but you can see it in his face and actions that it is his world ! About 4 years ago we started traveling around the country and making this hobby a big part of our lives and I am so grateful and proud that I can provide such a great life for him being that he is so limited on the things he can do and the things that he really enjoys, he does not enjoy many activities and does not like technology or to be in doors, he loves to be in the woods ! I will always go to any length to provide him his wants, needs and desires.
Atv’s have become such a big part of our lives that we now travel 8 months out of the year to different places across the country to explore new trails and meet new people. This brings me to my next conversation of ATV Therapy “
Our ATV adventures have become a big part of his therapy in such that he gets so much out of it. Damon has never wanted to be around other people of noise or any kind of chaos at all. He now enjoys being part of our club and being around other people as long as its ATV related, he still will not do birthdays, gatherings, Christmas, etc… but if it involves outdoors, he does. He seems to be so relaxed when we are riding that he comes out of his shell and shows everyone who he really is. Damon is not potty trained or does not use utensils when eating or act what some would consider appropriate in public, but we when we are trip, he is now saying some words , using forks and starting to use the potty. So much has happened in recent years and we all believe is because of two things: the Autism program he is in is such a great program with great teachers and our ATV adventures. Damon will sit and watch videos of riding and others riding as well, he loves to see pictures of our adventures.
Damon has never been affectionate at all to anyone, infact he does not like to be touch or hugged in anyway shape or form, it over stimulates him and will create behaviors . Damon can easily go on overload from this.
Last year on one of our adventures with our great friends Damon did something that has never been seen ( see attached pics of him comforting his friend after his friend got hurt on the trails ) he sat there with him for over any hour and you could tell Damon knew his friend got hurt, I cried right then and there in front of everyone because in 15 years have never seen Damon do anything like this ever !
I could go on forever of all the stories and memories we have made over the years on our ATV adventures, there are so many break throughs with Damon as a direct result of what we do
I wanted to start this blog to start sharing our adventures so others can see that this is a therapy and how much Damon enjoys this. I believe many others can enjoy these opportunities as well.
I am so grateful for all how support Damon and his special needs and I am so proud of my son for how far he has come in his life, to some it may not seem like much but to us it is huge !
It would take me years to blog all of our adventures and amazing times we have had, so I will post some highlights here and there. I want t share these times with everyone because I am so proud of my son and so grateful for all the supports we have.
Damon still struggles daily with many things and still does not speak except for sight words here and there but he has come so far in so many areas that we know he is happy and that is all that really matters.
I will continue to post on here and share Damon’s progress and happiness and the great friends we have and will have as the days go on. I thank you for reading our story, this is in a nutshell, but this is the outline of what we do. I have dedicated my life to Damon because I love him and needs it.
Here is an article that was done last October that was published in ATV World Magazine:

ATV World Magazine  : October 2011
My name is Darin Frye. I am a father of three, one of whom is my son Damon. When Damon was 2 years old, he was diagnosed with severe autism. He is now 14 years old and requires around the clock care. He has always loved to be in the great outdoors, and I have made sure he has had every opportunity to do so.
I am also an avid ATV fan. I received my first dirt bike back in the 70′s at the age of 5. I was hooked the first day. I learned quickly, thanks to my father. I grew up in an “outdoors” household and every spring, summer, and fall we were either camping, riding dirt bikes, or boating. ATVing has been a passion of mine ever since.

When Damon (we call him DJ) was 3 1/2, I started riding him in front of me on my quad around the yard. He loved it so much that we started riding several times per week in the back yard. This went on for a few years before I started taking him to other places to ride. As he grew, I made special quads to ride him on the back to keep him safe.
It’s 11 years later and DJ is now 16 years old, 6 feet tall, and 275 pounds. He still loves to ride more than anything in the world. We travel the country finding new places to ride. This has become a major part of our family. We put on anywhere from5000-7000 miles per season on the quad. It also provides good therapy for him and helps with his communication barriers.
I have had to make many alterations and modifications on the ATV to support his weight and to keep him safe while riding on the back. We have gone to great lengths to provide him fond memories of his childhood years. He does not speak, but we all know how much he enjoys it. We are part of a couple of local off road clubs, and they have welcomed him with open arms.
Lodging preparations must be made ahead of time for these trips. DJ will not tent camp; he does not like small enclosed spaces. We search for a cabin wherever we go then modify it for his safety. Much forethought must go into these trips to ensure his safety and to provide a good time for him.


Some of our routine places to ride include, Tall Pines ATV Park Allegany National Forest, Majestic Trails, Mines and Meadows, Southern Ohio, West Virginia,upper Michigan and many more.
We continue to travel the country in hopes of finding new places to ride and keep this wonderful hobby going. So many people along the way have bent over backwards to make sure all goes well with DJ on our road trips




DJ’S ATV Adventures and Autism 2013

ATV/ Off road adventures therapy ? Yes it does exist and EVERY trip we take proves to be amazing therapy for DJ. We travel about every weekend starting in April through Labor day weekend. Here is a very brief summary of what goes into these trips, including planning the trip, what destinations work and which ones do not, pre-planning, packing, specific needs for DJ , checklists, quad prepping, emergency planning, lodging, travel planning and much much more. It would take a lot of typing to put in writing how much really goes into these trips, so I am going to break it down into small summaries and give just the basic outlines.

The average person / family that plans an ATV trip has a lot to do to get ready, now throw a person with Autism in that plan and that plan is now ten times larger at least, in fact it takes more time to plan , prepare and pack for the trip than it does to enjoy the trip !

I first would like to talk about what these trips do for him, the actual results and the happiness it brings DJ.
We started riding 4-wheelers in our back yard when he was a small child , around 4 years of age. He seemed to love it right from the start. As this hobby grew for us we started traveling to different destinations in several states.
Here is just a few highlights of the benefits that DJ receives from ATV therapy:

1.) Communication and socialization with others, he has learned to ask for things by key words and gestures from people he does not know that well or even just met. He has learned to sit in a group around a camp fire and for small time frames be in a crowded place. He has learned to enjoy other peoples company and not shy away from attention from others. Prior to this he could not be around more than a few people at all for any time at all.
2.) He has learned to wait for food and also wait to ride, there are times when we have no choice to wait in line or for trails to open etc....He is getting better with this as time goes on.
3.)Process: he is learning process and steps, meaning the steps we have to take before we actually ride or eat. He is more understanding on these processes that have to happen before the “ fun” begins.
4.) He has learned what trust means, this is very hard to explain in writing, but he has learned to trust others and become more understanding of certain things that before he would have a “meltdown" . He has come along way with dealing with change, there are times the arrival of a place does not go as planned and has recently shown much progress in this area. He is starting to understand and deal with it better when things go wrong or not as described to him ahead of time.
5.) Behavior : DJ has been through many behavioral changes in the past few years including a lot of extreme aggressions towards others and self injurious behaviors. We refuse to over medicate him. I will do whatever takes to make him happy, safe and a fulfilling life for him without all the harsh meds. Our ATV trips GREATLY reduce if not eliminate these behaviors, the past 2 riding season we have no physical behaviors during the riding season, at home that’s a different story.....
Seems when outside in the wilderness he is “ free” from a lot of his stressor’s and triggers, however we cannot afford to travel year round and where we live the riding is very limited and to him “ boring”, we recently started snowmobiling and it did help this past winter, he defiantly likes the quad better and being in the mountains though. DJ is an “ outdoors kid “ he does not like technology or games or tv at all, he loves music though. DJ loves to travel and gets very excited when arriving at a riding place.
6.) Preparing for a trip: Recently I have started to involve him in some of the processes in preparing for a trip, keep in mind although he is 16 he has a cognitive level of around 4 or 5, he is very smart but in his own way and on his terms. He is starting to do some packing ( I get the items in a pile and he puts them into luggage etc). Small steps, but he feels included and thats the important part.
This is just a portion of the benefits he gets from these trips. We have seem many growths from his ATV therapy over the years and every year it grows more, if I could I would travel with him year round.

Here are some of the steps that are taken to prepare for a trip:


Step 1) Planning a place to ride and stay. This is probably the most crucial of steps because not all riding destinations are “ DJ or Autism “ friendly. I first look at the place to see what kind of lodging and “ home base” situation it has to offer, for DJ it is always the best scenario if the lodging has direct trail access, meaning that we can jump right on the quad from where we stay, having to travel back and forth adds much stress to DJ, so we always stay where there is direct trail access. DJ does not tent camp, so we must have a cabin style setting or lodge. The cabin needs to have water and electric, not so much electric, but water. Once we get to the cabin I must first “ DJ” proof it, meaning all breakables must be put up and windows or doors that do not lock I may have to make barricades or he may try to escape, also he has certain triggers that will upset him as do most Autistic children, so those triggers need to be removed or modified before he goes into the cabin. ( There is a lot of detail to the cabin or lodging situation, this is just a brief outline ).
The trails: This can vary, but for the most part DJ likes hills and good fast paced trail riding and of coarse mud ! , the more technical the better, he really gets a kick out of that. Flat land type riding tends to bore him fast, he loves a mountain type atmosphere the best. The atmosphere is another major factor, we have been to some places that are very rowdy and a lot of chaos, this is fine while on the trails riding, but when back at the cabin for dinner and camp fire, he likes the crowd to be on the small side to say the least, nothing against the more active riding destinations, but for him a more low key place is best.
Check in procedures: We must always do as much a head of time before we get there so there is little waiting, he does not understand the concept of time, so I try to call ahead and get everything I can done before we even get there , waiting in lines to register never is a good time for DJ. I always try to get trail permits or lodging paperwork done ahead of time so the arrival for him is as smooth as possible, he is learning to deal better with this though in recent times.
Step 2) Packing food , supplies, meds , clothing and more clothing and anything that we may need or even the possibility of needing, it needs to be brought. I have a huge checklist and it seems every year that list grows and changes! DJ is not potty trained and is non-verbal, so there many preparations that have to be put in place in case of an emergency or a “ meltdown” , not every single trip is awesome, some have some meltdown’s, but they are few and far between. A lot of the places we ride are very remote, so you have to have everything on hand in case of any situation, not always easy to do !
DJ goes through a lot of clothes, so making sure you have enough complete outfits is the key, also making sure you have what you need in case of an accident being that he is not potty trained, this also means extra everything on the quad itself, most of the time we head out for the day on the quad, leaving at 7 or 8 in the am and getting back to home base for a late dinner, so not only do you have to pack for the cabin, but also the quad too.

Step 3) The quad. The quad always has to be in perfect running condition because we often ride alone just the 2 of us and most the places we ride are very remote in the mountains, so the maintenance on the quad is always constant and we cary spare parts and many tools on hand just in case , and yes it has happened that we broke down far far from our cabin ! , not a fun situation to be in with DJ for he does not understand when something breaks.
First-aid, tools, spare parts, food, water, rescue flares, satellite phone, cell phone, clothing, incontinence items , self defense item and more.
DJ’s quad is heavily modified for the extra weight and the aggressive riding style we do, for both comfort and durability. Many add on’s and modifications have been done to ensure safety and reliability, for we average around 5 thousand + miles of trail riding per season.
Every year there are things that change, not every season is the same with DJ, as he grows and changes so do the trips and planning.

I feel many other Autistic children and adults can benefit from ATV therapy, every situation is different and every person has their own unique needs and planning. I have learned many many different types of scenarios and each place can be different as well. We will continue to travel as much as we can and enjoy the great outdoors and continue to help DJ grow and learn.

As you can see everyone in this household puts Damon’s needs above their own and are always willing to sacrifice their own needs and wants to make sure Damon has what he needs.
I have worked full time for a major portion of my life, I started working when I was 12 full time while going to school as well. From the age of 18 to 35 I worked 100 hour weeks and never missed a day or was late. As Damon ‘s needs grew I slowly decreased my work loads to ensure he was safe and has all the things he needs for a quality life. My wife Kandace has numerous health issues and physically cannot handle Damon in recent years.We have tried respite care and accepting help from others but it never works, no one knows his needs better than I. I now am at a point at the age of 40 that I find myself unable to hold a job or provide income for my family, I can only work while he is in school , which means I have to have a school teacher type of hours, off when he is off. I have worked in the Developmental Disabilities work place for years and in recent times was layed off of work due to budget cuts from the state. I am finding it very difficult to find work even with a great work history that I can be home when Damon is home.   My days are full as it is, Damon is constant supervision and requires around the clock care, plus the house work etc...but yet I do not complain to others, God gave me my son and I will ensure his quality of life. we take a day at a time and we know someday it will get a little easier.