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.