Young Adult with Autism Denied Heart Transplant

An article was published back in August about a 23 year-old male with autism being denied a heart transplant.  People get denied organ transplants all the time due to various medical reasons, but this one was based in part on the fact the young man had autism.  According to the article (link to the article is attached below), Paul Corby was born with a damaged left ventricle and therefore his heart does not pump the correct amount of blood.  According to a letter from the hospital, Penn Medicine, “given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior”, Paul was denied the transplant. 

The reasons given, in my opinion, are rather weak and borderline discriminates based on mental health disability.  These same reasons provided by the hospital for denying Paul the transplant could be applied to any patient for any surgery that is needed.  Granted, a heart transplant is a complex process requiring multiple procedures, but with the medical aftercare provided and family support recovery is no different for someone with autism as it is for any other patient.  Paul will be receiving around the clock medical care, and his mother will be right by his side throughout the surgery and recovery.  In regards to the unknown and unpredictable effect of steroids, there is no predictable reaction, medical or behavioral, that any of us may have after receiving steroids, and having autism does not increase the risk versus another patient receiving steroids after a transplant who does not have autism. 

Though, this does not rise to the level of a transplant, my son was 4 or 5 years-old when he broke his arm while playing on the monkey bars in our backyard.  While at the emergency room they had to sedate Zach with Ketamine to set his arm and then place a cast on it that went from his hand to the top of his bicep.  We thought for sure Zach would be whining and freaking out over the cast, but he really did not complain that much.  A week later we went to the doctor’s for a follow-up exam, and we were told that the cast was not helping the healing process and he would need to have surgery.  We all know that in order to have surgery you need to be sedated, provided pain medication and oxygen, and there is usually a monitor attached to your body to monitor your heart.  When Zach came out of surgery he had a splint with an ace bandage wrapped around it stretching again from his hand to the top of his bicep.  Zach was very low functioning at the time, and for 3 or 4 weeks he walked around with the bandage and did not try to remove it or complain. 

There is no reason why Paul Corby’s chances of recovery should be viewed as any different because he has autism.  Unfortunately, without the transplant Paul Corby may not make it past the age of 23.  His mother has started a petition on change.org to rally support for a transplant and I encourage you all who wish to help to go to change.org.  My thoughts and prayers are with you Paul Corby.

 

Here are the links to the article:  http://www.pennlive.com/midstate/index.ssf/2012/08/autistic_boy_is_denied_a_heart.html

 

http://abcnews.go.com/Health/autistic-man-denied-heart-transplant-upenn-hospital/story?id=17006152

The Pediatrician Part 3

When the test results came back Debby and I met with the pediatrician for about two hours to go over the report and discuss our options.  We found out that Zach was low in vitamin B12, which is key for the typical functioning of the brain and nervous system, and used by the body in the formation of red blood cells and metabolism of cells.  The pediatrician wanted us to start giving Zach a vitamin B12 shot three times per week, a multi-vitamin and omega 3 daily, and also a probiotic to help with his digestion.  At first we were a little nervous about giving our kid a shot, but the needle is about the length of a giant ant.  Our biggest concern was how we were going to administer it to Zach without him freaking out to the point the needle breaks off in him.  However, Zach has gotten so use to the shots he points out the spot where he wants it now and we just have to stick it in. 

Probably the biggest discovery during the meeting was finding out that Zach had PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection.  PANDAS are caused by the body’s immune reaction to Strep and the symptoms include obsessive compulsive disorder, anxiety, emotional mood swings, and oppositional defiance behavior.  Zach’s symptoms consisted of obsessive compulsive behaviors and some hyperactivity.  When PANDAS goes from dormant to active within Zach the obsessive compulsiveness is at a heightened level making it difficult to get his attention and focus, and transitioning him from one activity to the next is a battle.  When the symptoms are active we seek an antibiotic prescription from the pediatrician and within 10 days or so the PANDAS will go dormant again. 

As a result of the vitamin supplements we have noticed a tremendous change with Zach’s behavior, greater awareness of his environment, and increased social skills.  The vitamins coupled with the other treatment he receives in the classroom at school and through the therapies has helped Zach make tremendous progress over the last few years.   

The Pediatrician Part 2

We started to look around for a new pediatrician after a couple of issues of concern arose with our first pediatrician.  We wanted to find someone who was relatively close to where we lived, but the most important thing was finding someone who had some special knowledge of pediatric developmental issues.  My wife stumbled upon a female pediatrician, who had an office about mile from our house.  One day Riley was sick and she took her to the new pediatrician office versus the old one that was about 20 minutes away.  Debby had to bring Zach with her due to the fact I could not get time off of work.  We typically only bring Zach with us to the doctor’s when it is an appointment for him, because he normally did not do well at the office. 

Debby was very impressed with the new pediatrician’s demeanor and care she gave Riley, but also pleased with the attention she gave Zachary as well.  Little did we know at the time that the majority of her clients had developmental issues, and a good number of the majority was diagnosed with autism.  Shortly thereafter we found out she was moving her office about 15 minutes away , but that did not deter us from wanting  here to continue to be our kids pediatrician, especially, Zach’s. 

During Zach’s first annual check-up we had with the new pediatrician Zach and I spent at least an hour and a half at her office going over everything from time of diagnosis to discussing the behaviors that Zach exhibited.  She then asked if we just wanted her to be our pediatrician for well and sick visits or if we wanted her to explore treatment options for Zach.  I asked about what kind of treatment options she was referring to as Debby and I had talked about some treatment options mentioned in news stories and on the internet that we were opposed.  The pediatrician suggested vitamin supplements might help, but she was not going to throw a bunch of pills at my son without first finding out what areas he might be deficient.  The pediatrician wanted Zach to have blood and cell test conducted, and once the report was back she wanted to sit down with Debby and I to discuss options. 

Remember when I said Zach did not do well at the doctor’s office, well, he dislikes doing blood test even more.  The test the pediatrician ordered required 12 vials of blood be taken and then it was shipped to some lab in Texas.  Unfortunately the blood test was not covered by my insurance company, but what we found out during the results made it totally worth the investment.

The Pediatrician

Just like a lot of things in life we try to find good professionals to help us resolve issues, provide guidance, and steer us in the right direction.  Prior to Zach being born we did some research to find a good pediatrician and we thought we had located a good one. If Zach was of typical development we probably would still be with the same pediatrician, but not all pediatricians are created equal.  Yes, all pediatricians are required to have the same amount of training and medical school prior to being licensed, but some pediatricians specialize in certain areas of medicine besides general practice. 

During some of Zach’s development questions and issues we sought some guidance from our pediatrician.  At Zach’s 2 year check-up we were concerned about his speech development and we were told that his speech was not unlike any other 2 year-old boy that comes into the office for a visit.  When Zach turned 6 or 7 years-old we were concerned with some of his behavioral issues, including, hyperactivity and temperament.  Our pediatrician suggested that we put our son on Risperdal, an anti-psychotic medication that was tested and shown to help behaviors in children with autism.  The results from the research regarding the medication were published in the New England Journal of Medicine. 

The one side effect we were concerned with was weight gain.  Zach’s appetite increased tremendously and within 3 months he gained approximately 15 to 20 pounds.  The pediatrician then decided to switch Zach to Abilify.  Abilify was another anti-psychotic medication known to help behaviors in children with autism.  We were not very confident that the new medication would help and so we sought the help of a behavior therapist to help us and the assistance we received had a greater impact on Zach then any medication.  Since the behavior therapy was having a great impact and the Abilify did nothing other than continue Zach’s weight gain, we decided to wean Zach off all medications entirely as it was more of a detriment to his health.  Frankly, Zach’s personality was not the same while on the medication and we just wanted our boy back. 

Within a month of weaning him off the medication Zach’s weight was back to normal, and working with the behavior therapist helped greatly with redirecting his temperament and negative behaviors.  We then started looking for a new pediatrician, who had greater experience with providing care to children with developmental issues, and we found one right around the corner. 

Stay tuned for “The Pediatrician Part 2”

Leeds Farm

For the past 6 or 7 years Leeds Farm in Ostrander, Ohio, has been hosting an event for families raising a child with autism called the Autism Harvest Festival.  The festival happens during one Saturday in the month of September from 8:00 am to 10:00 am, but families can stay at the farm all day if they choose.  There are many activities the family can participate, like, the big zip line, which is about a 400 feet long, a giant air trampoline,  straw barn where the kids can just run around like a bunch of crazy people, giant slides, pedal cars, and smaller zip lines for the little kids.  Also at the festival are vendors from various organizations that provide services to families and children with autism.  The vendors include behavior and speech therapists, private autism schools, respite care providers, and this year the Columbus Blue Jackets from the National Hockey League had a booth to promote their hockey program for special needs kids. 

This was our fifth year attending the event and fun was had by all.  Our kids did the big zip line twice, we went on a hay ride through the woods, and Zach went absolutely nuts in the straw barn as he reenacted scenes from the television show “American Ninja Warrior.”  The most satisfying part of the event was being amongst other family members who can relate to our situation and letting our kids be exactly who they are without getting funny looks from strangers looking on.  It was a good day for everyone and thanks to Leeds Farm for putting on another great event and making us feel like family.

 

 

It's IEP Season Part 3

Preparing for the IEP is no easy task, because things will be shared about your child that may be heart wrenching to hear and you may or may not be completely sure what it is in the IEP.  If this is your first or second IEP you are probably still feeling a lot of anxiety and stress leading up to and during the meeting.

We recently had our sixth or seventh IEP meeting and the last couple of years have been without anxiety, but still a little stress as we our never 100 percent certain what the school district is willing to provide.  I wonder if it has become easier due to our preparation or experience.  This year we prepared for the IEP meeting based on a questionnaire sent home by the teacher.  The questionnaire was titled, “Future Planning Parent Questionnaire”, and it consisted of five questions.  The purpose of the questions was to help the teacher address our concerns and goals for the IEP

The first question asked, “What are some areas, academic and nonacademic, in which you are happy with your child’s rate of success?”  For us we are very happy with Zach’s progress in math, social skills, following directions and rules, handwriting (coming along and much improved), and initiating communication with others (non-family members). 

The second question asked, “What are some areas, academic and nonacademic, in which you wish to see more improvement in your child?”  We want to see Zachary become more focused on his task as he can be easily distracted when given multiple step directions for a task.  Reading and comprehension has always been an issue, and he is currently reading at a first grade level while in the sixth grade.  We want him to continue to work on his handwriting and hopefully find a way to reduce his verbal self-stimulation or as we call it “TV Talk.”  TV talk consists of Zach humming to himself or verbally replaying a scene from a show he watched aloud.

The third question, “What short term goals do you have in mind for your child this school year?”  We want more self help skills, like, understanding money, increased vocabulary, proper conversational skills, and proper voice level.  At times Zach does not always use the proper terminology when initiating conversation and his volume level can be loud. 

The fourth question, “What long term goals do you have in mind for your child when he/she is an adult?”  This has always been a tough question, because I would love to have my kid have the same opportunities as other kids.  I would love for him to go to college, secure a full-time job, get married, buy a house, and live happily ever after.  The reality for Zach is probably none of those things with the exception of a job.  What we hope for with Zach when he becomes an adult is independent living with some third-party monitoring to make sure he is still receiving the services he needs, and be capable of holding a part-time job that fits his development level and capabilities. 

The fifth and final question asked, “Are there any specific goals in which you would like this IEP to address?”  We want this IEP to work on helping Zach carry out multiple step directions whether written and verbal, continued handwriting practice, and send home the book he reads in school so we can provide reinforcement.  Also, weekly updates from the speech and occupational therapist in order that we can share it with the therapist Zach see’s outside of school. 

These questions were very beneficial to us and maybe useful to you as well if you are preparing for a Child’s IEP.  The one piece of advice I can give parents out there is think long and hard about your child’s abilities now and where you want them to be at the end of school year, but be realistic.  I mentioned in another blog post to set goals that are realistically attainable, but also challenging. Also, be realistic about the school district and what they can provide.  The school district is not NASA and cannot give you the moon if you know what I mean.  Always remember that the IEP is a TEAM effort as I firmly believe that everyone sitting at the table has your child’s best interest in mind. 

 

It's IEP Season Part 2

The IEP should not be a confrontation, fight or battle, but rather a collaborative effort between the parent and the school district personnel.  I firmly believe that everyone participating in the IEP’s that I have attended has always had my son’s best interest in mind.  This is not to say that we have always gotten everything we have asked for, but when ever denied or told in a nice way something was not going to be put in the IEP we have always been given a good explanation.  I would love for Zach to receive four hours of speech and occupational therapy per week at school, because this would reduce the amount of private services he would receive outside of school and also reduce our out of pocket expense.  The reality is school districts have limited funds and resources, and the speech and occupational therapist that work for the school districts have a number of students they need to see each week.  Unfortunately, speech and occupational therapists have to limit the amount of time spent with each student in order to meet the minimum standard of service.  In a perfect world each school district would have enough therapists to provide four hours a week of service to each student and everyone would be happy, but as you know a perfect world is an illusion or a figment of our imagination.

One thing we have advocated for over the years to be placed on the IEP is for our son to have homework so we can see what he is doing daily in class and provide reinforcement of the work being done in the classroom at home.  Although Zach does not get much homework, the school has been good about sending home a book for him to practice reading and showing us what he has done in class so we can try and replicate it at home. It would be difficult to replicate what a speech therapist does since Debby and I are not therapist ourselves, but we at least have Zach do sight words as a means to practice his vocabulary and practice handwriting as this is a goal of his occupational therapist.

We recently had Zach’s IEP meeting and it went very well, but again there were moments in which our hearts sank a little though we know the reality of Zach’s ability. Zach is in the sixth grade and the teacher advised us at the IEP that he is reading at a first grade level, which was tough to hear.  Consciously or subconsciously knowing the reality of your child with special needs is hard enough, but hearing someone else verbally tell you or reinforce it to you is a harder pill to swallow.  Needless to say, reading is a priority on the IEP this year along with a host of other things.  Just like last school year we have great hope that Zach will be greatly improved by the end of this school year and we are anxious to see how much improvement he will make.      

It's IEP Season

The Individualized Education Program (IEP) is a tailored education plan to meet the needs of a child with a disability reach educational goals.  Typically the first part of the IEP discusses what the student’s current capabilities, such as, he can identify 100 out of 200 sight words or the student can add two digit math problems.  The second part is usually spent discussing goals, such as, during the rating period the student will identify 150 out of 200 sight words or he will complete three digit math problems.  The IEP also spells out how the student will meet each goal and the techniques that will be used to give the child the best opportunity at success.  Ultimately, the goal is to have a plan with attainable goals based on your child’s current ability and what you think he can accomplish within the school while having the goals be equally challenging. 

Being the father of a son with autism I have some experience with IEP’s.  Prior to our first IEP meeting we were handed a draft copy of the IEP and then asked to come up with some goals for the school year.  After submitting our suggestion for goals Debby and I had to make sure we had our own plan in place if we were told certain goals would not be entered on the IEP or if the school district was going to fight us on something else we wanted.  We went in with the mentality that we had to fight for our son and make sure he got everything we thought he should. 

 There were about 7 to 10 people sitting around the table to discuss my son’s current abilities and achievements, and then goals for the current school year.  We were nervous and stressful, and I remember sweating through the layers of clothing I was wearing.  I sweat if there is a blizzard outside, but when it’s hot I sweat to the point it’s just nasty.  For almost two hours we sat discussing my son’s case and going through the IEP page by page.  There were moments of depression when listening to the teacher describing my son’s current abilities, and times I just wanted to leave the room and go wait in the car so I could cry in private.  Somehow I held it together in the room of people that I would have never met had it not been for my son.  What we realized after the first couple IEP meetings was these people that seemed like strangers sitting at the table had our child’s best interest and hope in mind.  The IEP was not just a meeting amongst school district personnel and parents, but it seemed more like a team meeting to come up with a strategy to help my son be much better at the end of the school year then what he was at the beginning. 

I have heard and read the stories of families having difficult meetings with school districts especially when it comes to the IEP.  Debby and I are not ones to have a knee jerk reaction to what others have experienced, but rather base our reaction on our own experience with the IEP and knowing what we want for our child. Fortunately for us our experiences with the IEP process has been positive, and the school district has been very receptive and supportive to the goals we have for our child.   To those who have not had positive experiences I would say that you are one team member and the school district personnel are your other team mates.  Somehow you need to work together for the greater benefit of the student and child, because fighting never accomplishes anything.      

Stay tuned for “It's IEP Season” part two

So Close But So Far Away

There are times when my son seems so far away, but he is sitting right next to me.  The distance between us can be painful knowing he is in the same room, but I am unable to reach him.  Even if I try to engage him he can be resistant with him telling me “no” or “go away”, and sometimes he just gets up and moves to another area of the house to continue with whatever he was doing so not to get interrupted again.  He could be playing with cars on the floor and I try to join in by picking a couple cars for myself to pretend play with him, but he wants nothing to do with it.  He would rather move the cars away from me or demand that I give them back.  There are other times he is present with his wanting and initiating interaction with others, and it is during these small moments of clarity and relevance that I most enjoy the relationship we have as a father and son. 

It’s rare in the fall season that we spend time in the backyard tossing around a football or playing basketball, and it is rare that Zach wants to help me do things around the house, like, mow the lawn or hand me tools while I replace the garbage disposal.  Finding time together and doing things that we share a common interest so we can bond is often limited, but trying to take full advantage of those moments when they happen can make a world of difference for the relationship. 
For a number of years I was involved on a limited basis if at all with taking Zach to his therapy appointments during the week.  The duty was given to my wife who was obviously getting run down with running all over the place to get him to the appointments on time while also trying to entertain our daughter. Within the last couple of years we decided to split the therapy appointment duty and now my wife takes my son on Mondays to his music/social integration therapy, and I take him Wednesday to speech and occupational therapy.  This small moment of riding in the car with Zach to and from therapy has given me an opportunity to communicate with him one on one, find out how he did in school, and also talk with the therapist to gain some knowledge regarding what they are working on and how Zach is progressing.

One thing Zach and I do enjoy doing together on the weekends is wrestling in the living room or any room my wife allows us to in the house.  Zach is usually the one that initiates the wrestling match by diving on top of me and at some point his sister wants to join in, which usually does not end well for me.  It’s really cool that Zach is at an age and development that he wants to engage me into playing an age appropriate game with him, which was not always the case, but one I completely enjoy.  There is also an occasion when Zach will want to watch football and then he will try to tackle me when I get up to grab a snack during the commercial.  

These moments may seem simple, short and not significant to some, but they are moments of great significance when we think about how far our son has come with his development.  The goal now is to have more initiated and interactive moments that last longer, but regardless of what we are doing I just want to be a part of Zach’s world where ever he maybe at any given moment.  Any moment with one another is time spent together, and that really is all I want with my son. 

If I Knew Then What I Know Now

They say a good percentage of people who graduate college do not work in the field in which they majored for a degree.  Maybe one of the reasons people do not work in their field of study is because some other opportunity presented itself.  Then again, maybe something happened in their life that made them have a change of heart and greater passion for something else.

I am clustered in the group of folks that work in the field in which they studied, and I started working in the field of criminal justice while still attending college to gain experience. In the beginning of my career I had a lot of passion and drive for what I was doing, and I was excited every day I went to work eager to help offenders.  The goal was to help those I served to make a positive change in their lives or hope that I would make a small difference with those reentering society after varied lengths of incarceration.

It sounds cliché, but if I only knew then what I know now I would have never majored in criminal justice.  Knowing what I know now about my son and his developmental disability I would have majored in something more meaningful to help my son, other kids like him, and the families raising a child with autism.  Maybe I would have majored in social work, clinical counseling, or some other human services degree.  What I once felt was going to be a life-long career I would enjoy and find some meaningful satisfaction at the end of a work day until retirement is now just a job.  Do not get me wrong, I am pleased to have a job that pays the bills and provides medical benefits for my family, but that is as far as my satisfaction goes. 

After parking my car at work in the mornings I sometimes stare at the building dreading the next 8 hours of my day.  There are moments throughout each day in which I think I am wasting my time sitting in a work cube when I could be helping some family raising a child on the spectrum.  Whether I like what I do or not, I am providing something meaningful to my family; financial stability.  I just feel like I want to do more and have more to offer to people out there dealing with the same thing my family is coping with.  Maybe one of the underlying or subconscious reasons why I started this blog was to reach and share with others this odyssey some of us share together.  Being an introvert, it has been difficult to share with others my thoughts, fears, hopes and the raw reality of raising a child with autism from a father’s perspective, but writing about it or writing in general is something I have always loved to do. 

My wife at times has tried to rationalize with me that it is probably best that I do not work in a field to assist kids and families with autism, because going to my regular job in criminal justice is like a break from our stressful reality.  What my wife forgot is she married a man and by nature we do not think rationally all the time.  So I will pretend as best I can for now that I like my job when I am there, because they pay me.  Then I will come home and do what I love and find meaningful; blogging about raising a child with autism from a father’s perspective and this unique odyssey I share with many others. 

Lost in Space Part 2

I think NASA is beneficial to us on earth in a variety of ways.  We need NASA to help with national security, tracking hurricanes so we know went to run for cover, and communications so we can reduce the amount of dropped calls we get on our cell phones.  Maybe I just need to get a better phone or change my telephone provider.  Anyway, NASA does do some things that can directly impact us here on earth, but I think they get a little carried away with some other projects that we on earth are not getting a very good return on our taxpaying investment. The Mars rovers, the space station, and wanting to return to the moon for further exploration are just a few projects with little if any direct benefit.   

Do you ever wonder what the heck they are doing all day up in the multi-billion dollar orbiting penthouse they call the space station?  I know they are doing some kind of scientific research or at least that is what we were told.  But what kind of scientific research are they conducting? What direct impact does the research being conducted in the space penthouse have on us down on earth?  Do you not think that whatever research is being done in space could also be conducted here on earth and save us more than a few billion dollars?  I have suspected for years that one research project consisted of astronauts being assigned to stare out the window with the hope of seeing some kind of extraterrestrial being do a flyby.  Thus far, no such flyby or sightings have been reported and I am guessing that we really are the only significant life that exists in the galaxy. Therefore NASA has answered the question, “Are we alone?”  YES, WE ARE!!   

We know the purpose of the Mars rovers is to search for water and possibility that life does or once existed on the Martian planet.  So NASA has sent several rovers up to Mars to take pictures, samples of the soil, dig for potential fossils, study rock formations, and a bunch of other test to find a sliver of life.  Again, with all of this scientific research being conducted what is the direct impact for us on earth? 

Think about the billions of dollars we as a country have invested for NASA to build these projects and the billions more that we will continually invest for maintaining them.   Twenty years from now there will be a need to upgrade the international space station and a third one will be built, and we will be sending our tenth rover to Mars.  Instead of spending another 2 billion on a Mars rover, tens of billions on another space station or a billion to send man to the moon again, maybe we could invest that money so we on earth can have a direct benefit. 

I remember my son having his class in trailer portals in the back of the middle school, because there was no room in the main building for his special education class.  We know insurance companies do not pay the cost for a number of therapies known to have a positive impact on the development of children with disabilities.  We also know there is no known cause or cure for autism.  Maybe we could take the money NASA is wasting in space on the Mars rover and start a grant program for families to assist with paying for therapies.  Maybe we could take the money for the space station and provide it to researchers here on earth to explore a possible cause and cure for autism.  Maybe we could take the money NASA is to receive to send a man back to the moon and improve the educational programs and buildings used for special education.  Just maybe we could get our hands on this money to ensure there would be a direct impact on the lives down on earth instead of it being wasted on future space junk. 

Frankly, I am hoping they actually find a Martian on Mars and when they do he pulls out a big missile, and blows the Mars rover into slivered pieces.  Maybe then NASA will get the message to stop invading space with meaningless projects that do not improve or sustain life on earth.  

 

 

 

 

 

Lost in Space

Do you like space?  Not wide-open spaces and not your own personal space, although, it is rather annoying when people invade your imaginary personal space borders. I am certainly not talking about extra space you would like to have in order that you can collect more stuff like a packrat or some kind of hoarder, and not extra space to build a man cave or panic room.  However, the more my wife and daughter disagree I think there will be a need for a panic room in the near future for my son and me to hide.  The kind of space I am really talking about is the space above us where the planets orbit, the various satellites float, from where the moon hovers over us at night to provide a beacon of light in the dark, and the sun dangles overhead to brighten and warm our day.  It is cool, right?  The things we know about space, and what is being explored in the giant space that surrounds planet earth is fascinating and cool stuff.  I think it is human nature to be drawn to the things we cannot tangibly experience ourselves or have limited access through pictures, books, and internet searches. 

Space travel and exploration is one of those things we are curious about based on our inability to experience it hands-on and limited information about what is really out there.  Whenever NASA post pictures on the internet from the Hubble Telescope, the Mars Rover or some other probe they have launched into orbit, we have a desire to glance at the pictures, because we want to know if anything new has been discovered or just to see another cool picture of a planet that none of us will ever be able to orbit ourselves like an astronaut.  When I was in grade school I was just as fascinated about space exploration as every other kid.  I remember this guy would come to my school every couple of years or so to give a presentation on the latest space exploration news and other things NASA was developing.  He brought in models of planets, satellites and probes, and always had a slide show of new pictures from space. These pictures were incredible and built an appetite for wanting to see more of the universe that surrounds the planet in which we live that we will never be able to witness first-hand ourselves. There was always this cliff hanging type ending to every presentation with leaving the audience wanting to know more about what NASA was going to do next, but greater  sense of hope about the possibilities involving the future and what this great country could accomplish.

I remember at the end of one presentation the guy mentioned there might come a day when we will land an unmanned probe to explore the planet Mars.  How many Mars rovers have been sent to the planet?  I do not have the actual number, but it has to be close to a handful.   Each time a new rover has been dispatched to the Martian planet it seems better equipped to handle the terrain and the environment, and more tools to conduct additional scientific research than the previous one. Taking thousands of picture of the surface, collection of soil samples, looking for fossils, exploring rock formations and searching for evidence of water, all seems relevant when you are trying to answer the question about life and if it ever existed on a place like Mars.  An important question to ask when you are a scientist dedicating your career in the hopes of finding the answer or at least starting to put together the answer before your life is over.  NASA has never been an agency to disappoint the general public with the “Wow” factors of things they have discovered while exploring planets and providing great pictures to further feed our curious desire to see more. 

Exploring Mars has not been the only top project of NASA over the past 25 years or so.  During the 1984 State of the Union Address, President Ronald Reagan had a vision of a space station that would constantly be orbiting and inhabited by astronauts from around the world conducting some form of scientific research on a continuous basis.  He challenged NASA to build the station and have it assembled in space within 10 years.  Fast forward to today and the space station Reagan wanted built is about to become space junk as a new international space station has been assembled to replace the outdated and technologically antiquated inaugural one. 

So, what exactly does all this talk about space exploration have to do with autism?  Stay tuned for “Lost in Space Part 2” to find out.

Apple Picking Attempt #2

Apple picking attempt #2 went off without a hitch except for the fact Debby could not join us, because she had to work.  The weather was great and the temperature was perfect.  We could not pick our favorite, McIntosh, because they were all picked out.  However, we did pick Golden Supreme and they are similar to a Golden Delicious apple.  Zach went around to several trees, and used his shirt as a temporary basket to collect some apples until he could place them in the bag.  He also took a picture of Riley and me standing together in the Orchard.  I have included a couple of pictures of our trip to the orchard.

On the ride home Zach was very entertaining as he pretended to speak Japanese  and he was trying to ramble off the play by play of the show American Ninja Warrior that he watched earlier in the day on an Asian network through Youtube.  I have no idea what he was saying, but it was funny to hear.      

Apple Picking Attempt #1

Being from New England, Debby and I love the fall season for a variety of reasons.  The fall foliage, cooler temperatures, sitting around a fire outside and our favorite apple picking are just a few reasons.  It just would not seem like fall without making a yearly pilgrimage to go apple picking for McIntosh regardless if we still live in New England or not.  I could be living in Guam and would still try to find an apple orchard in the middle of the fall season just so I could go apple picking.

The first fall season we spent after moving to the mid-west was spent trying to find the things that made us enjoy the season without being in the place that helped us fall in love with the fall season to begin with.  We located a great place just outside of Columbus, Ohio to go apple picking called Lynd’s Fruit Farm.  For 20 years now Debby and I have made our annual trip in September to pick McIntosh and again in October for Golden Delicious and pumpkins.  Along the way we have introduced this tradition to our kids and it is something they have come to expect and look forward to doing as a family. 

When Zach got to the age when he could start picking apples he preferred to just pick one or two that he wanted to eat, while the rest of us picked the apples to fill the bags.  For the past few years Zach is more engaged with helping to pick apples to bring home, but he still finds time to crunch down a couple apples while the rest of us do the majority of the harvesting. 

This Saturday we made our first trip of the season to Lynd’s and both of our kids were excited, but when we arrived the paths to the apple picking were closed. Due to the amount of rain we received the night before the orchard was to wet for vehicles or people.  Riley, being 11 years-old and of typical development, was capable of understanding that due to the weather we could not go apple picking, but Zach, being 12 years-old with autism, did not understand.  He started to lose it emotionally, because he was told a week ago that we would go apple picking on Saturday.  All week he had been waiting and looking forward to the event, and now it was not going to happen. 

Since we could not go apple picking, we decided it might calm Zach down if we went inside the Lynd’s store and buy a bag of apples.  After we parked the car Zach started to say, “No, I go apple picking”, and he was getting teary eyed.  As much as we tried to explain to him that we could not go apple picking today, Zach was not capable of comprehending why. 

Debby tried to calm Zach down and offered to go apple picking another time.  “We will go picking some other time Zach”, she said. 

“What time?”  Zach asked

“Next weekend we can go apple picking”, she said.

“Oh no”, Zach said slightly whining. “Apple picking tomorrow?” he asked.

Although, Debby works on Sunday and the entire family would not be together for our first apple picking of the season, Debby thought there was no reason why Riley, Zach and I, could not go picking together tomorrow.

“Zach”, I said. “If the weather is good tomorrow we will go apple picking.”

It was obvious Zach was still upset that he could not do it today.  We all went inside the store and Debby took Zach to get some snacks, and then returned to the car to avoid any further emotional meltdown.  By the time Riley and I got back to the car Zach was completely calm down and content.  Let’s hope the weather tomorrow is good and we can pick apples, because I do not want a replay of what happened today.   

Show me the Funding Part 2

I have read and heard of the stories about families having financial hardships due to the cost involved to provide treatment for their children on the autism spectrum.  We have been fortunate enough to live in a state where there is some funding available, but we still have paid for some services out of our pocket. There probably is some funding where you live as well you just have to go digging for it.  Funding for autism services is not like products being sold at Wal-Mart or some other big retailer; they are not advertising it on television, the radio, or in magazines.  Funding is out there and you need to ask about it or you will never get your hands on it. 

The federal government provides hundreds of millions of dollars to state governments to manage or oversee funding programs.  It is a very confusing process and at times I think it would be less painful to ram my head into a cement wall rather than have someone try to explain it to me.  Therefore, I am not an expert on this topic and often times have to ask my wife 25 times a week how it all works.  I will keep this as simple as possible and provide several links so you can research this often confusing and convoluted process when you have some significant time to review the information.

In Ohio, there are a few Medicaid waiver programs, such as, the Level 1 and Individual Options waiver (I/O Waiver).  The Level 1 waiver is for individuals with developmental disabilities and can help pay for respite care, day habilitation, transportation, specialized medical equipment, and other services.  There is a limit on the amount of funds you can use per year with the Level 1 waiver.  You can checkout eligibility and services provided at the following link: www.dodd.ohio.gov or www.olrs.ohio.gov/medicaid-waivers

The I/O Waiver is for individuals with developmental disabilities who are Medicaid eligible and meet the requirements for the level of care at an Intermediate Care Facility for people with developmental disabilities, but want to remain at home.  There are several services covered under the I/O waiver, including, homemaker and personal care, residential respite, transportation, home delivered meals, adaptive and assistive equipment, supported employment services, and a list of other services.  I will warn you that there is a waiting list for the I/O waiver.  We have been on the list since Zach was 3 years old and 9 years later we still have not received any I/O benefits.  Although, it would be nice to have, the important thing is the I/O waiver is made available to our son when he becomes an adult as the program will be of greater benefit to him at that time.  You can checkout eligibility and services provided by the I/O waiver at the following link:  www.dodd.ohio.gov or www.olrs.ohio.gov/medicaid-waivers

For educational needs, Ohio has an Autism Scholarship program that allows families who qualify the options to send their child to a special education program other than the one offered by the school district where the child lives.   The total value of an autism scholarship is $20,000 per school year.  You can learn more information regarding the Ohio Autism Scholarship at the following link:  www.ode.state.oh.us, click on the finance tab and then select scholarship programs to learn about the autism scholarship program.

Like Ohio, other states have similar programs and I would encourage you to check with your state or county government agencies to find out the funding programs that are offered, eligibility requirements, and what services are covered.  Some people do not apply for some or none of the above referenced programs, and frankly I do not understand why.  Maybe they do not think they meet eligibility requirements, because a lot of government programs seem to be based on income.  However, it does not cost anything to apply for these programs and I would encourage you to apply for some of these programs to determine if you meet eligibility.  These programs could assist in alleviating some of the financial burden you may be feeling due to the fact insurance companies do not cover the cost for a lot of services children with autism need.     

Show me the Funding

I work for state government and I have good health insurance coverage…for the most part.  Except when it comes to getting the insurance company to pay for services rendered due to my son’s autism diagnosis.  What most people do not realize is that insurance companies will not pay for speech, occupational, physical, or behavior therapy if the diagnosis is autism.  They also will not pay for blood and cell tests if the tests are being conducted to determine the types of vitamin supplements a child on the autism spectrum might need due to deficiencies to better help in the development and behavior process.  Of course, they will not pay for any vitamin supplements that are prescribed by a pediatrician either. 

Some of what is covered by insurance companies is mandated by law while other aspects of an insurance policy is the option of the employer if they want it made available to their employees.  There are some companies out there, not many, that do offer insurance coverage to their employees and family members for autism related services.  Recently, a few state governments have passed laws mandating that coverage for autism related treatment and services be offered to all employees who receive health insurance benefits, and other states are starting to consider similar laws. 

Call your insurance company and ask why they do not cover treatment for autism related symptoms, and you will receive various reasons for the exclusion of coverage. Since, there is no known cure for autism any treatment provided is an effort in futility, right?  There are no approved medications that can help reduce the symptoms and behaviors of those living with this incurable disorder either.  The speech and occupational therapy a person with autism needs is deemed as developmental or educational, and can be obtained through a child’s school district by way of Individual Education Plan (IEP). 

Call them a “can response” or just plain bullsh*t, the line you receive from the insurance companies could be easily applied to other health conditions that are covered. Last I checked there was no cure for depression, but there is approved medications and clinical therapy to treat this mental disorder.  Insurance companies do cover the cost for some prescription medications proven to reduce the symptoms of depression and also provide funding to assist with paying for clinical therapy. Similarly, autism may have no cure, but it is treatable and there are many treatments and therapies shown to reduce the symptoms of autism. 

Like many issues we face during the course of our life, money becomes a factor in the decision making process and insurance coverage for the treatment of autism is no exception to this rule.  It can cost thousands of dollars per year to provide some of the treatments necessary to help a person with autism. On the flip side, by not providing services to give these individuals on the autism spectrum an opportunity to improve their abilities will potentially be more expensive when you factor in the government assistance they will need to receive over a lifetime.  The goal is to get individuals on the autism spectrum as best prepared as possible for the opportunity to live independently or semi-independently in order that they are not a constant fixture on the government assistance payroll. 

Personally, I hope that one day our son will be capable of living independently with someone checking on him from time to time to make sure he is getting everything he needs.  Our goal has always been to give him the greatest opportunities for potential success, but there is no telling what his capabilities will be when he becomes an adult.  He may be capable of holding a job, paying his own bills and having his own place to live, with limited assistance from third-parties (social services and government entities).  We need to stop with the attitude that no cure equals no hope for change and improvement, because we as parents have hope for improvement and a better life for our children. 

Stay tuned for “Show me the Funding” Part 2.     

Gone International

This blog has been up for about two weeks and I wanted to say thanks to everyone who has checked it out.  When I say everyone I mean everyone from around the world.  You see, this blog has received hits from the United States, Russia, Germany, Hong Kong, South Korea, and Saudi Arabia.  Thanks for making this blog international and I hope you continue to tune in and follow along as there are more blogs on the way.  I also wanted to encourage you all to give me some feedback by leaving a comment.  Thanks again for your support and take care…Eric.   

Now What? Part 4

Besides the speech and occupational therapy, we thought Zach needed something more to help him and us manage some his behavior issues at home.  Zach had issues with transitioning from one event to the next and would often times use verbal or physical actions as a means to express his objections.  He would also use a loud voice and became obsessed with using the computer and other things in the house.  There were times that Zach’s physical objections were so intense I would have to wrap him up in a body lock to calm him down and prevent him from harming himself, others, or property.  Unfortunately, there were moments   when he would hit one of his parents or sister, swipe pictures off the wall, or throw an item across the room. 

Some of the incidents were placed on public display, like, a grocery store, parking lot, park, playground or the mall, but a lot of incidents occurred within the walls of our home.  Regardless of when and where it happened, it was stressful and frustrating.  There was one time while driving in the car with his mother he got mad about doing an activity in which he had no interest so he picked some loose item up that was lying on the floor, threw it at his mother, and then chucked his shoes out the window.  There was another time he wanted to go pick his mother up from work and when we arrived he started to climb up a ladder.  I told him to get down and after he verbally objected the physical scuffle was on.  I had to pull Zach out of the store and while driving home he started to show more objections by hitting his sister.  I then pulled the car over on the side of the freeway. I remember it was cold outside, but I was wrestling with Zach to get some physical control of him that I became soaked in sweat.  Twenty minutes later we were able to continue our return home that was only a couple of miles away.   

I would say that 80-85 percent of the day Zach behaved fine, but that 15-20 percent when he would have a blowout was just mentally and physically draining, and caused a lot of tension between Debby and me.  We obviously needed some help with deescalating and managing his home behaviors with the hope that what we learned would translate into useful tools in public as well.  We were looking for someone who could help us with the behaviors, but also assist Zach with some academics at home.  One of the psychologists that evaluated Zach in order that we could apply for funding through a program recommended a behavior therapist to us.  Enter Ms. Emily and the beginning of Zach’s behavior transformation. 

For Zach and a lot of kids on the autism spectrum there is a need to have a visual schedule whether handwritten or using pictures.  Emily provided tremendous assistance with developing a schedule for our son with a reward system.  She would ask him, “What are you working for?”  Zachary mostly would work for computer, play the WII, use the IPOD touch, or build and play on an obstacle course (which he loves).  Then Emily would list out all of the things Zach would have to complete prior to getting one of the rewards he was working toward.  For example, Zach would have to complete a math sheet, read a stack of sight words, and practice handwriting (not his favorite task) before using the computer.

We then took the schedule with the reward system to manage Zach’s behavior with transitioning from one activity to the next in the hope that he would get use to transitioning, and over time it would become easier for him to do.  This also helped Zach to mentally prepare for what to expect for the day.  Previously Zach would want something at the grocery store and if that was not the first thing we did for the day Zach would have a blowout, and verbally or physically object.  Under Ms. Emily’s reward system we would list out everything we were doing for the day and would tell Zach if he did good while we completed all of these other things he would get his reward of going to the grocery store.  Today, Zach has gotten so use to the schedule that we typically do not have to write it down, but rather we verbally tell him what we are doing and he picks one thing on the list he wants to do as his reward.  This is not to say that after all of this Zach does not have any blowouts, but they are considerably less frequent and virtually forgettable.  It took a lot of time to implement and for Zach to get use to, but Transitioning from one event to the next has never been easier. 

With the assistance of Ms. Emily we also established some basic rules of the house that we posted for Zach to see.  The rules consisted of gentle hands and feet, quiet voices, nice words, and listen to mom and dad.  We also established a list of things Zach could lose if he did not follow the rules, like, go to bed early, no computer, no watching one of his favorite shows on television at night, and extra chores he would need to complete around the house.  Whenever Zach would raise his voice out of anger or started to physically object to something we would remind him of the rules.  Reminding Zach of the rules consisted of us reading them to Zach and then making Zach read them to us as well.  Again this was not something that was implemented over night.  It took a lot of time, repetition, and positive reinforcement to get Zach use to the rules and how to respond to them.  Today, Zach understands the rules so well that we no longer post them in the house, but at times have to verbally remind him of the rules and we make him say them to us to make sure he still remembers them. 

Ms. Emily also suggested and then implemented time limits on how long he could use computer, WII, and other activities to reduce Zach’s obsessive behavior.  The longer Zach would play on something the harder it was to transition him to another activity.  For example, Ms. Emily would tell Zach he can use the computer for 15 minutes and would set a timer. Once the timer buzzed Zach would have to get off the computer.  By limiting the time he can spend on an activity and giving him the time limit has greatly reduced his obsessive compulsive type behavior with certain activities. 

It has been close to five years since we have been working with Ms. Emily, and not only has she transformed Zach’s behaviors she has made our family life a whole lot less stressful.   A great behavior therapist, like ours, can greatly assist a family with tempering some of the behaviors at home, provide structure, and reduce the stress among family members.  THANK YOU MS. EMILY!!!