Culture around Autism.

 One of the goals of this blog was to chronicle our families struggles as well as the lessons learned in our journey in dealing with our child's condition and to that end, I am refocusing the blog to that end.

I recently sat down for lunch with my wife and asked her about her writing aspirations, and as it turns out, she wanted to write about the experience with autism that we had as parents as well;  it came as no surpise since we deal with autism every day in some form because our child has autism(as well as several other issues).

Without going into a rant;  here are a few highlights of the challenges that seem to be fairly common although most of them are actually dealing with other people rather than the child with autism:  In this case the challenge is one of perception such as

• being perceived as a bad parent because you can't control your child
• being perceived as a neglectful parent for similar reasons
• having child services come to your home because someone has perceives you as not providing for the child's needs.

Expect this to happen.  While it is possible that there are some areas in the world where autism is more understood and a supportive environment, but this is often not the case.  

In our experience,  we have received dirty looks from people because of our child's condition in various public places.  

Unfortunately, one such public place is public school and there are some extra reasons why they give us dirty looks

• The state in which we live tends to treat autism not as an actually medical condition to be treated but some sort of behavioral issue that needs to be ... well punished(as in,  "they just need a good whoopin!" or "they need to go to the alternative school for bad kids").
• Public education as a whole is generally underfunded and understaffed and most county commissions will do their very best to cut the funding every year.

So the school is basically being pushed into this scene by both the parents of the neurotypical children, the parents of child with autism and government entities that prefer to operate out of some form of ignorance and lots of times tend to view the realm of education with suspicion anyway.

As a result, the parent of the autism child is left alone in this multifaceted battle for their own child and it is a battle and with that in mind, it's important to find help where ever you can. 

God's will for autism?

In our journey as autism parents, we have had our share of trials when it came to matters concerning religion. 

Even before, the diagnosis of our child on the spectrum, we had trouble in churches with our youngest.  They would typically call us back saying things like

• She did this or that
• She needs to follow the rules
• We have to consider the needs of the other children
• She needs to be institutionalized or jailed.

We tell our story to other churches we visit and the people in the church seem compassionate enough when they hear it.  There is the shaking of the head, the sympathetic pat on the shoulder and a statement that it would be fine for our child to come to this church because... "all are welcome" the stories that we told of our experience would never happen there.  

They are well meaning in saying these things. There seems to be a willingness to learn about autism on the part of those who say this; however, there is always one person or a even a few people who do not feel the same way and do not wish to someone in the church who would be disruptive.  They usually band together, talk to the church leadership and eventually they convince them that having us in their church was bad thing.  Some even say that this is "God's will" .

I wonder though, what exactly is a God's Will for people on the spectrum?

We certainly don't know the answer.  As far as I know, the Bible doesn't cover autism (or OCD , ODD etc.)  It gives no specific set of  instructions on how to handle someone like our child, however, I believe that there is one thing that might give all of us a good starting point.

Listen:

Psalms 46:10   "Be Still and Know that I am God"

This particular verse, while simple is difficult to accept amidst the chaos that sometimes comes with autism, however, in being still, one can observe and learn more about the child.  This skill is probably one of the most important things that any parent can learn in order to connect with the child.  After all, what good would it be to just talk "at" the child or anyone else for that matter?  No one learns anything by constantly nagging, posturing or quoting the rule book.

Be Open to Change:

Isaiah 43:19 "See, I am doing a new thing"


Autism is something very new to many people and the number of cases seem to keep climbing.   This new thing called autism, if we are to work with it and those affected, requires that we be open to this new change.

Many people, including those on the spectrum are afraid of change, yet we all acknowledge that change is inevitable.  So our job as autism parents is to embrace the change and work within the change that is already happening within our children all the while making use of and adapting old skills and learning new ways to communicate with our children and perhaps even the rest of the world.

Don't be afraid to learn something new.  As of my pastors once said(wisely) "the day you stop learning is the day you stop growing"


Accept that this may not be comfortable:

I could go through a whole plethora of verses on this one.  The prophets weren't comfortable and certainly had to step outside the comfort zone.  Joseph probably didn't find prison very comfortable.  Change is sometimes going to be painful and there are many who would run from it simply because the change is not comfortable.  Our job is to help our children through those changes, especially when the change is painful.


Accept the mistakes: 


This should be a no-brainer, actually, but there a many who will worry incessantly about making a mistake when raising children and others who pass this "worry" trait on to their children, putting extra pressure on them to be perfect so that good schools will come and take them or they will get an executive lever job.  Keep in mind, that  It's okay to make a mistake.  No one achieved anything without making mistakes or failing several times.  This is a normal part of growing.   We must accept this in ourselves and in others.



So does this answer the question of  "What is God's Will for Autism"?   I can't say that anyone can answer that fully, for there are many perspectives that could be valid.  I will say that if a condition forces us to listen, to adapt and learn new ways to relate to one another, then perhaps that is part of God's Will.

Autism and the Long Way Around to Independence

Hello Readers

For several years now, my wife and I have known that our J. is not getting all the help that he needs to be successful in life.  We have sought more help from other organizations and other people within our town and some of the neighboring town, in search of other therapies for J(such as OT therapy, play therapy, etc) but without much in the way of success.

I checked out some of the resources that I have at the office and found a therapist in a neighboring state  It is a challenge for us since, we do have a lot of drive time to get there, but so far, we have made there 3 times so far with another appointment set for the 26th of June.

Our challenge these next few weeks in the interim is to have J perform tasks that will make help him to get more independent such as doing some cleaning, making his own lunch, etc.   These are simple tasks for ordinary people, but for J, they are frightening for him.  

Autism and CBT

One of the things I have experienced throughout my growth as a parent is an amazement at how much I find out I can learn through the challenges that come with being a parent of a child on the spectrum.  As hard as it gets when dealing with some of the behaviors and worries, I can still look at my child and still learn something about myself.

Just as an example, let us take our long search for therapies for our child.

In our search, we have found some therapists locally but very low on availability, and we have searched in other towns and we even went so far as going to another state to find a good therapist.   When we could go to the sessions, a majority of the time, the main style of therapy being was always some variation of behaviorism and it would always be up to us to implement the plan.

I did study some psychology when I was in college and I had some exposure to behaviorism in some form throughout my childhood.  Most of the time, the parent has to try to change the behavior by using a system of rewards and scheduling in order to accomplish the goals that the parents have set.  Sometimes, this is successful and sometimes not. 

Speaking for myself, I found behaviorism to be a bit distasteful, simply because to me, it felt like I was simply trying to control the behavior of my child from the outside in hopes that one day, my child would be able to be in control later on as an adult. I also find it distasteful because it felt so much like the manipulation I faced as a child coming from both sides of a broken family.  Being manipulated usually hurts in the long run and out can do lasting damage.

I had a different view. Using CBT(cognitive behavioral therapy),I feel that my child could gain insight into themselves, they could learn how to use that knowledge and adapt to the world and they would gain strength in self-knowledge.  I certainly learned a lot when I was going through CBT and as I continue to work with my child, I will continue to learn even more.

We did find a good therapist as it happens and we are using CBT in this case.  This gives our child a more active part in the process and I have noticed a lot of improvement in communication.

Why Do I Exist?

One of the many symptoms of Autism and OCD is the tendency to repeat statements and questions over and over again, such as

• "Are my hands clean?"
• "Do you like babies?" 
• "I like trains"

Most likely, this sort of behavior is a form of self-stimulation; however, one question that he has been asking caught my attention recently.  In this case. the question is 

"Why do I exist?"

Of course, this question has been pondered and questioned by almost everyone at some point. Religious scholars and philosophers can sometimes give us a glimpse into the grand design and a person's relation to it all. 

For several months, I have asked that question myself since as a parent, it is natural to want to help the child grow into adulthood and be able to cope with the world and to find some meaning to life and that becomes even more of a challenge since this child has autism with developmental delays. My wife and I have gone to many therapists in order "fix" what is wrong without getting much in the way of success. We had this notion that if we just "fix" a few things, he can succeed in life somehow.

But still, I would return to that same question of "Why do I exist?" How I thought, can I answer that question?  After a lot of pondering, I think that J and I were both asking the wrong question.  It's not "Why Do I Exist?"  it's "How do I fit into this complex puzzle we call, 'the world'?

One day, last year, I was with my wife at a local Goodwill store, checking out some clothing and various other items.  Since I also have a habit of finding books to read, I went over to the book section and did some browsing there. I picked up a hardcover book called. Writing To Learn: How to Write - And Think- Clearly About Any Subject At All. and I decided to buy it to see if I could learn something new about writing.  The book itself describes several challenges to teaching students on how to write well about any subject and how that challenge is being addressed.

In chapter 2 of the book, Mr. Zinsser describes meeting with a Chemistry professor in Minnesota to discuss this problem and the professor stated that he was going to be teaching a course on chemical discoveries that changed the world such as the periodic table of elements that were discovered by the Russian scientist  D. I. Mendeleyev.   He pointed out that the elements themselves did exist, but it was only Mendeleyev who found the commonalities in each of the elements and created the table based on his findings.
Without Mendeleyev's work, science would not be the same and mankind would not have progressed as far as we have. 

Imagine, if you will if  Mendeleyev had been told repeatedly that he just needed to work to fit into society and just accept the status quo in chemistry and forget about his work. Where would be now in the realm of knowledge? 

The astronomers Copernicus and  Galileo were told to fit in and just accept the world view of the day which held that the Earth was at the center of the universe and all of the heavenly bodies revolved around it. Copernicus and Galileo observed and saw something else and that conflicted with that world view. Where would we be without Copernicus or Galileo?

In the book of 1st Samuel, chapter 17, we read about the conflict between David and the giant, Goliath.  All of Israel was afraid to face this giant one on one, except this scrawny looking shepherd boy who saw this giant as no more powerful than any other animal that he had faced while taking care of the sheep. We all know what happened according to the story. So once again, the question to ask is where would we be without David who saw things differently?

At some point in all of our lives, there is going to be at least one challenge that can only be met with the help of one person who sees a challenge from a different viewpoint and has a different gift.  So. we need people with autism in our society simply because they see things differently. 

Autism is definitely challenging for parents, for children and for society in general; however, the question that we need to ask is "Where would we be without those challenges?" 

The Attitude Does Matter.

Positive Attitude

A few weeks ago, our first born child graduated from high school and so we, as parents, attended the graduation ceremony in celebration.  Our first born definitely worked hard in school and achieved a great deal and is getting a good scholarship as well to good school   The ceremony itself though, left a bit to be desired though.

During that ceremony, the principle laid out a lot of ground rules including such rules as

• Don't clap or make noise when you hear your child's name being called or we will escort you from the building
• Stay for the entire ceremony.  
• Respect the process

The keynote speaker was a local politician and here are some of the highlights from his speech that I remember.

• Make your bed
• Brush your teeth
• Clean your fingernails
• Don't think you're entitled
• Keep your nose clean
• Put your head down and work and someone will notice you.

Apparently, this was what he thought the students needed to know to get into life.  There was no mention of the good work that the students did in the school and no congratulations for getting through high school and no expression of confidence in the student body at all.

I talked about it with my wife and we later found someone who went to the same high school and had graduated about a year prior and he stated that he head the very same speech from the very same local politician.  

Listening to this, I thought to myself.  "Well, no wonder we can't find much in the way of support for autism in this town. The leaders of the community not only find that too inconvenient, they also find it inconvenient to inspire the children or anyone else".

So what do we do for inspiration?

We, as parents have to set a much better example than the poor example I heard at graduation.  We have to reach down inside ourselves and reach out to our Lord for the inspiration and for hope.  For the Lord did take young Joseph from slave to second in command of Egypt in spite of all of the evil that was done to him.   The Lord can take anything and make it work and work well.

So, with that in mind, we must remind ourselves and our children that their work and their lives mean something and that they are worth much more than the words of the politicians.

Homeschool and Autism 1

One of many challenges that we face as autism parents is schooling.  Over the course of several years, we have had many trying circumstances when dealing with the school system itself, it's rules and regulations and of the behaviors caused by J's condition

During the first few years of school, J still had problems in class and several meltdowns if something didn't quite fit into his idea of the way things should be. The symptoms seem to fit into the Asperger diagnosis.https://www.autismspeaks.org/what-autism/asperger-syndrome.  We had several IEP meetings on that and other matters and the school did provide some motor skill therapies and he seemed to be okay in 4th grade.  

The biggest change came during 5th grade, at which point, the school starts the transition to a middle school environment which includes changing classes.   When this started, there were days that he was so scared that he didn't want to go into the building.  He even told us that he was scared of changing classes.  For someone on the Autism Spectrum, this feels like having the ground drop away while walking.  We attempted in vain to explain this to the school system, but they continued to push him into going to the school.  We continued this "exercise" until his sophomore year in high school at which point, we decided that we had had enough. 

Now we are homeschooling him instead of sending him to school which presents other challenges and benefits.  Here's a breakdown

The Pros

• He is in a familiar environment so he feels safe enough to learn
• The homeschooling allows us to see what other challenges he faces in the learning experience
• It takes the public school out of the equation. This sounds more like a con than a pro, but when the support we receive is lacking... taking him out is a definite plus.

The Cons:

• Time management.  Both of us are working full time, so we have to take turns working with J on school work when we get home
• Learning what is being taught:  Some of the subjects that are taught, we weren't very good at in school to begin with, so we are attempting to learn as much as we can to teach it to him as well. 

We are just about to finish the school year out and I think we are going to change the curriculum to something more old school and try to supplement the learning with Khan Academy as well

I will keep everyone posted.