Zach's Christmas List

For a number of years Debby and I have struggled to figure out what to get Zach for his birthday and Christmas.  As a parent you want to get things your child wants, likes and will enjoy, for those special occasions otherwise it is not a very good or memorable moment for them.  Our dilemma was based on two distinct reasons. First, Zach could not verbalize to us what he wanted and so it was a guessing game.  Second, we were unsure if he would actually like or know how to use what we got him. 

Over the years we had some significant hits and some definitive misses.  We tried some toys, but it became frustrating as a parent to see him struggle to understand the concept of what he was suppose to do with it and eventually he would chuck it aside.  For whatever reason we also tried getting him things that would be therapeutic and he would like to play with.  I remember one year we got him a couple of 2 to 3 pound medicine balls, yoga bricks and balancing disk, so he could use it as an obstacle course with the hope that he would stop using our furniture. Needless to say a young child is not very interested in exercise equipment at age 7, 8 and 9.  Now that I look back on it, maybe Debby and I were trying to exercise vicariously through our son or subconsciously we wanted him to be a Pilates instructor in the future. 

In recent years, Zach’s continued improvement of his communication skills, verbal and written, has made buying gifts for him a lot easier.  The last couple of years he hand wrote a list of things he wanted for his birthday and Christmas.  The majority of things on the list were age appropriate and items I would expect someone of his age to ask for. Zach has also been working on his typing skills with his occupational therapists and this year he decided to type out his Christmas list.  Then after he printed out the Christmas list he hand wrote across the top, “Dear Santa please bring my stuff.”  This was the first year in which Debby and I did not have to scratch our heads or bang it against a concrete wall wondering what to get Zach. 

 

Merry Christmas to all and to all a Happy New Year!!!  

Connecticut Tragedy

Unless you live in a remote part of planet earth with no communication with the outside world you have probably heard about the devastating tragedy that occurred in Newtown, Connecticut on December 14^th.  Just prior to 9:30 am, a 20 year-old male stormed into an elementary school and opened fire on students and staff resulting in the death of 20 students and 6 others.  This was the second deadliest school shooting in United States history behind the incident that occurred at Virginia Tech in 2007, but the one in Newtown is arguably the most shocking due to the young age of the majority of the victims.

As a society we always seem to be looking for the answer of why such an incident happens and the answer to that inquiry is not answered until several weeks later once law enforcement completes their investigation, but in the end there is no logical or rational answer that can explain it.  A lot of people have commented that they cannot believe that such an incident happened in a place like Newtown, Connecticut where the population is approximately 27,000. The fact of the matter is regardless of where you live in America and how safe you may feel today does not immune you from a tragedy happening to you or your community tomorrow.  Unfortunately there are all kinds of weapons that are easily accessible in our culture and a minority of people who feel the need to commit such heinous acts that lacks any logical explanation. 

As a society we must be vigilante as we conduct our lives without being completely paranoid and protect our loved ones without feeling the need to barricade ourselves from the potential harm that we could be exposed to on a daily basis.  Not knowing what each day may bring to our lives, tragedy or triumph, always tell your kids, spouse and others close to you how much they mean to you today, because tomorrow it all could be taken from you by some random act of violence or accident. 

Being a native New Englander my heart is full of sorrow and sadness today just like everyone else’s in the world over this senseless tragedy.  Thoughts and prayers to all the victims and their families.       

 

Giving Thanks

There are so many things I am thankful for on this Thanksgiving Day, but my thanks are not just limited to one day of the year.  What I am thankful for I carry with me every day; although, I may not express my thanks openly on a daily basis to those I am thankful for, but today is the one day I will.  Here are my top ten things I am thankful for today and everyday of the year.

10. I am thankful for the place where I grew up, Concord, New Hampshire.  This small town is a great place to raise a family and a place where you appreciate small town living that enriches your life.  It definitely taught me to be humble, grounded, and kept my feet on the ground.  I think about and miss New Hampshire every day. 

9. I am thankful for the humble and simple life my parents provided for me and my siblings.  It has given me a greater appreciation of the things I have been able to accomplish and goals I have reached throughout my life. 

8. I am thankful for the people I have met throughout the 41 years of my life, whether short or long-term, a brief encounter or one that has lasted for years; you have made some kind of impact on my life.

7.  I am thankful for the friends that have come in and out of my life and those that have remained.  We have shared personal struggles, good times, and had a lot of laughs together.

6.  I am thankful to the City of Columbus, Ohio for being progressive in the amount of education and therapeutic programs they offer to families raising a child with autism.

5. I am thankful for all the therapists, teachers and doctors, who worked with my son throughout the years to help him develop and understand the world around him.  Without dedicated professionals like you I am not sure Zach’s future would have as much hope. 

4.  I am thankful for my mother for the 40 years she was with me before she passed.  You taught me how to be child, young man and adult.  You showed me how to be kind, caring, and loving to those around me.

3. I am thankful for my children for keeping me grounded. You make me want to be a better father every day.

2.  I am thankful for my wife and the more than 20 years we have spent together and the incredible friendship we share.  You are definitely the rock of the family.

1. I am thankful for each day I am allowed to continue living on this earth and the time I get to spent with my family.  I could not imagine being without you. 

Ohio Renaissance Festival

A few weekends ago I took my kids, Zach and Riley, to the Ohio Renaissance Festival down in Harveysburg, Ohio.  I had heard a lot of good things about the festival and have wanted to go for a number of years.   The festival consisted of people dressed in the Renaissance era clothing, comedy shows, games and rides, musicians playing music from the historical period, and of course vendors trying to sell merchandise.  I thought the kids might enjoy some of the shows and games, but I was grossly wrong. 

The only thing Zach was interested in was a replica pirate ship that was on display. However, when he found out that he could not board the ship and explore it he was not interested in anything other than knowing what time we were leaving.  We stayed for about 3 ½ hours before departing and I initially thought it was just a waste of time and money.  After thinking about the trip some more I realized that it may have been a waste of money, but not necessarily a waste of time.  You see, a couple of years ago Zach would not have been capable of staying at a place for 3 ½ hours he had no interest in being without making it difficult on his parents.  He would have verbally and physically objected by throwing himself down on the ground in protest.  At the Renaissance Festival where he clearly had no interest as evident by his unmotivated body language, Zach hung in there and tolerated the environment without incident.  

We always want our kids to experience new and different things whether or not it turns out good or bad, and if they liked it or not.  Going into some situations we kind of have a feeling if it will be a positive experience and other times it is unpredictable with what could happen.  From one parent raising a child with autism to all the others doing the same, I encourage you to expose your child to different environments.  This is one of many ways they will learn and adapt to various environments they will be confronted with in the future.    

IT'S JUST FREAKING MASHED POTATOES!!

We have a routine every Sunday night after dinner and Zach never lets us forget.  We set the dinner menu for the week, and everyone picks a day and a meal.  Why do we do this you wonder?  For years it was very difficult to get Zach to try new foods or to get him to eat the food we had prepared for dinner.  Often times Zach would have a completely different meal from the rest of us.  Years ago we realized we could not live with making two different meals for dinner and plus Zach needed to learn to try new things.  In general everyone has sensitivities to certain smells and taste, but with autistic children I think that sensitivity is slightly greater than most.

We started with putting new food on his plate with a simple rule, “You have to try everything on your plate.”   We did not expect Zach to finish everything we had him try, but getting him just to try it at times was a battle and a half.  He would object at times just by the appearance of the food and other times he would smell the food before objecting.  There were times that he would try a new food and actually like it and wanted more of it.  The menu was introduced after Zach would come home from school, find out what we were having and either start objecting or had a meltdown, because it was something he did not pick or want. By writing out the dinner menu it visually and mentally prepares Zach for what is to come, and it has made a huge difference at dinner time and at the dinner table. 

As time has passed and Zach has matured his menu selections have grown leaps and bounds, but there is one item he cannot stand to even try.  He will eat potato chips and tater tots, but my word you put mash potatoes on his plate and you are in for dinner time war.  Not sure if it is the texture, smell or taste, but he wants nothing to do with it.  The other night we had mash potatoes and we only wanted him to try it.  You would have thought we were asking him to give us his left kidney or right lung.  Complete meltdown with loud verbal objecting to the point he started yelling, and I had to remove him from the table for a time out.   Forty-five minutes later he calmed down, but due to being so upset he did not eat much dinner at all that night.  All this objecting about mash potatoes from a kid, who once dipped dill pickles in Italian Wedding soup.  IT’S JUST FREAKING MASH POTATOES.   Both of his parents are very stubborn people…so we will try to get Zach to eat mash potatoes again and the next time we plan on having mash potatoes is Thanksgiving.  Dear Zach, thanking you in advance for trying mashed potatoes on Thanksgiving.      

 

Pumpkin Light Meltdown

We have this electric pumpkin we have been lighting at night, because it is October and Halloween is just around the corner.  Zach absolutely loves this pumpkin and is one of the main reasons why we have it on display.  So, the other day the light bulb blew out and Zach was not happy.  He started yelling, “The lights out, the lights out.  Fix it! Fix it!”  We did not have a spare bulb in the house and Zach started crying about the fact his pumpkin would not be lit for the night.  He wanted it fixed and he wanted it fixed now.  As much as we tried to explain and redirect him that the light could not be fixed at that very moment he continued to tail spin and spiral into an emotional meltdown. 

Thankfully I had to go to the grocery store to pick up a prescription so I invited Zach to come along and told him we could get a new light bulb.  We arrived at the store and found Zach’s bulb for the pumpkin.  We then were standing in line for my prescription, which seem to take forever.  Zach continued to hold the light bulb package and gripped so tight you would have thought it was the last light bulb available in the world.  Then without any provocation Zach stood next to me, put his hand on my shoulder and said, “I can’t believe it  dad…I can’t believe I cried for some pumpkin lights.”   “No sh*t” I said to myself…and Zach was quiet the rest of the night. 

Barnes and Noble

The book, A Road Less Traveled; A Father's Odyssey Through Autism, is now available at Barnes and Noble.  Here is the link http://www.barnesandnoble.com/w/a-road-less-traveled-a-fathers-odyssey-through-autism-eric-griffith/1113317811?ean=9781480021907

Amazon Europe

I receive a lot of page views from people around the globe.  For those of you who live outside the United States and interested in purchasing my book it is available through Amazon Europe.  Take care everyone...Eric

The Book Amazon Link

Here is the link to the book on Amazon for purchase as a trade paperback or Kindle ebook.

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=a+father%27s+odyssey+through+autism

The Book

The book, A Road Less Traveled; A Father's Odyssey Through Autism is now available for purchase through Smashwords at http://www.smashwords.com/books/view/243434.  Through Smashwords you can purchase and download an electronic copy to devices, such as, Nook, Sony Reader, Kobo, and others.

The BIG announcement is here!!!! The BOOK is HERE!!!!

If you have enjoyed reading the blog maybe you will also enjoy reading the book.  A Road Less Traveled; A Father’s Odyssey Through Autism, is now available for Amazon Kindle at http://www.amazon.com/dp/B009NFXQAE or trade paperback at https://www.createspace.com/4012861.

From the back cover: Zach was two months shy of his third birthday when he was diagnosed with autism and as he struggled to understand and adapt to the world around him, his father struggled to understand the diagnosis and the means to help him. Feeling devastated about his son, Eric's inability to cope and accept his son for the unique person he had become and not for the diagnosis he was given caused Eric to spiral into severe depression resulting in hospitalization.

In this story, Eric Griffith gives a real and honest view of raising a child with autism from a father's perspective and a family's effort to make a better future for their child. A Road Less Traveled chronicles the impact an autism diagnosis has on the family, the battle to find funding and programming, the conflict about what causes autism, testing of one's faith, coping with negative public perceptions, the fun and humor Zach brings to the lives around him, and providing hope for a child with disability that has no cure. This story will inspire, humor, and touch on every human emotion of all parents.

I Hope you enjoy it!!!!

 

BIG announcement is coming

A BIG announcement is coming soon from A Father's Odyssey Through Autism.  Stay tuned!

A Story About Autism in Russia

I recently read an article (link attached) about the plight of families raising a child with autism in Russia.  It made me appreciate the fact I am raising my child in the United States where there are many programs available, research being conducted for a cause and cure, and greater societal acceptance of those with disabilities.  The most disappointing or unfortunately part of the article were the negative comments regarding autism from those in positions of power, who could make a positive change on the lives of those living with a disability.  According to the article, a Moscow city official, Sergei Buyankin, was quoted as saying, “Hitler buried kids like this in the ground”, while speaking about a local private school that helps special needs children.  Note to Sergei Buyankin, come to America and say that about my kid, and I suggest you put on an athletic cup to protect your private parts.

In regards to societal stigmas or ignorance, the Moscow Aquarium refused to allow a group of autistic children admission, because “visitors do not like to see the disabled-it disappoints them.  It is unacceptable.”  To all Russian families raising a child with autism,  bring your kids to the United States and you can visit any aquarium you want.  We will start at the New England Aquarium in Massachusetts, go to the Atlanta Aquarium in Georgia, tour the Newport Aquarium in Kentucky, and finish at the Columbus Zoo and Aquarium in my home town of Columbus, Ohio.  You will not be refused or shunned at any of the facilities, and fun will be had by all without societal stigmas. 

Debby and I have always been appreciative that we live in the United States and have tremendous programs available to us for our son, because I could not imagine what our life and more importantly our son’s life would be like living in places like Russia.  The United States is not without individuals suffering from blatant ignorance either.  Debby and I have dealt with and confronted situations from others, such as, stares when our son is not behaving in public the way he should and comments from strangers as well.  For the most part, people in the United States have been very receptive and supportive of people on the autism spectrum.   

 http://en.rian.ru/features/20120910/175883233.html

 

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.