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!!!