Friday, September 24, 2010

Controversial me

In a recent appointment with my oldest son's occupational therapist (OT), she indicated that my son needed help with his proprioception which is defined as:  "the perception by an animal of stimuli relating to its own position, posture, equilibrium, or internal condition."  As I was contemplating my controversial beliefs about how my oldest should be educated at this point in his life, I realized that I too was struggling with a similar kind of proprioception.  Instead of being related to my body, however, mine is related to my inner self.  I need to work on my own feelings (position), learn to take a stand (posture), find inner balance (equilibrium), and my self confidence (internal condition).  I simply am affected too much by other people's opinions on how we raise our child. 

I am not a black and white thinker so I'm always receptive to new information and new ideas.  I value that I am like this but I find it difficult to emphatically state that "I know THE answer."  I'm always amazed with people who feel they know the answer to things which seem unknowable such as religion, parenting, education, politics.  My beliefs are fluid, are often reevaluated and, at the most, I have strong leanings.  With the exception of a few basic concepts such as my belief that all are equal, that there is never an excuse for cruelty, and that diversity is a blessing, I rarely make absolute statements.

At this point, I have not found a school which we feel would work for our son.  It is not uncommon for parents of children who are twice exception (2e - gifted and learning disabled) to shop around endlessly for a school which can handle their child's behavioral and sensory issues (for example) along with their being gifted.  At this point, our school district has given us two options:  the school where we have had very difficult issues with the principal or a special education class.  Neither are appropriate.  

When reading about the experiences of other parents with children on the spectrum who have decided to homeschool, I was touched by a quote from one mom:

"When Jalen was going to school, it was like trying to pound a square peg into a round hole. There really wasn’t anything in the system appropriate or healthy for him. Leaving him there while I tried to fight for what he needed seemed counterproductive to me. We just didn’t have time for that — he was fast on the way to developing mental health issues on top of his other problems because of school. It was healthier for him and me to leave it behind."

I wanted to call out, "I hear you, sister!" when I read this. 

In my humble opinion, our educational system works for most children, those children in the middle of the bell curve as well as those on the outer edges but not for those who straddle both extremes such as my son.  I can't say that there aren't some 2e students who have been fortunate enough to find a good educational setting but, it seems, that they are few and far between.  At best, parents have to fight tooth and nail to get the correct services.  My son's brief experience at school was so negative (they called the police on my 5 year old for having a typical autistic meltdown) that I'm not willing to give them a second chance.  Not only did I disagree with their treatment of my son, I was saddened by how it adversely affected my son.

Although I may be uncomfortable defending our decision to homeschool our son for the time being, I know deep down that we're making the right decision.  As time goes on, we will reevaluate this decision, we will continue to view other schools and classes and we will make any changes which we feel are necessary and in his best interest.  Institutions such as schools are important for society - for most of society.  Education, however, regardless of what form it is in, is important for all and if an institution cannot provide the right environment, then it is our duty to find the best possible way whether it is controversial or not.

As for my own proprioception-like issues, I am comfortable with my feelings (position), I'm working on taking a stand as much as I can (position), I'm aware of my need for inner balance (equilibrium) and I'm building my self confidence (internal condition).  I may not have an occupational therapist but, thankfully, I do have my husband, my family and my friends to help me regain my inner strength.  Although I'm used to having controversial beliefs and ideas, my belief that my son deserves to be educated appropriately (in whatever setting) is the most important one for which I am willing and prepared to fight.

Wednesday, September 22, 2010

Endless quest

I can sympathize with people who are on endless quests for youth, beauty, immortality and other seemingly ungraspable dreams.  The pursuit can be all consuming.  Searching for the next best thing to get you there - wherever there might be.

Thankfully, I'm relatively ok with my age and some would even say I'm young (all those older than 37 years old but certainly not those younger than that).  Beauty?  Well, what is it anyway really?  Even the beautiful have ugly days and the less attractive have beautiful days.  Why make my life harder by worrying about how I look to other people?  Granted, I want to be decent and would not enjoy being repulsive but, other than that, who cares?  As for immortality, eh.  I'm here now.  I'll be here until I'm not.  Pure and simple.

Thankfully, I'm not in pursuit of those dreams.  Instead, I'm in pursuit of the next best thing which will make our lives easier.  I can remember when this pursuit began:  when my first son was born.  Since then we have sought the help of a huge variety of professionals:  lactation specialists, psychologists, neurologists, psychiatrists, occupational therapists, autism tutors, and so forth.  This is not including all the specialists for the twins.  I won't bore you with the additional details.

In addition to the professionals, we have read a billion books with the answer.  THE ANSWER.  I don't know how many times that I have read about a book and rushed to amazon to buy it because it gave me comfort to know that this new book would make something better.  Something. 

From the days before my oldest son's diagnosis, I was already going down the correct path to helping him by creating schedules of the day - I noticed he did much better if he knew what his day was going to be like.  I spent countless hours creating schedules that not only contained an accurate picture of his day but made it fun and colorful so he'd enjoy it - until he didn't anymore and I had to create a different one.  Every time I made one, I just knew that this schedule would make everything run smoothly.  I have a library of these schedules, signs, and systems we've used over the years because I can't seem to get rid of them.  Interestingly, my son feels great nostalgia for them and occasionally finds them in their new hidden spot and drags them out to look at them.

For a person who really believes in the value of simplicity and in not indulging children in order not to create an unrealistic sense of entitlement, we have an incredibly huge amount of toys.  Toys for rewards, toys that teach, toys which help certain muscle function, toys which help with stimming and so forth.  I find myself driven to go to a store to get the next thing that will reward my child (the oldest mostly at this point but the youngest as well).  Although we have slowed down on this aspect of the pursuit, it's still there occasionally.  It's hard not to feel the need to find something to make your child happy, to help them grow when their life is filled with such stress and difficulty.  We're slowly trying to find a balance between indulgence and positive facilitation of growth.  I've also found that it also helps to hide the catalogs.

Our latest focus is on education.  What is best for our son?  (The youngest is in preschool and is doing well.)  Is it more important for him to be in a school setting in order to learn to basically do what he doesn't want to do for 3 hours or is it more important for him to learn naturally and at his level?  (He is gifted which makes things very difficult because his behavior issues are that of an autistic child but his intellect is advanced for his age.)  Today, I visited our school district's best option for my son at this point.  Although I was impressed with the professionalism of the teacher and could tell that they would likely be able to help my son with his behavior, they were seriously behind my son's academic capabilities.  How can I reconcile that?  At this point, I feel I have to give homeschooling a good try before I have him placed in what is essentially a special education class. 

It's difficult not to stress over the right thing.  There are no real answers because no one can tell the future.  I have to take a step back and focus on our goals and to consider what is ultimately important.  So much of a person's success is driven by their inner foundation, how they feel about themselves, how secure they are.  Putting my child in a class that is below him academically so that he can try to sit still for 3 hours is probably not going to do that for him.  I think I can help him with his behaviors with the help of trained professionals while subsequently teaching him at a level more appropriate for his intellect.  I'm hopeful that this will help provide him with that solid foundation and, perhaps, in the future he can return to a school but only if they see him for what he truly is which is a very bright, young boy.

For now, our pursuit for making things better is focused on education but it is also focused on socialization (via social skills classes), occupational therapy, and several other avenues for improvement.  Some things may not prove to be effective in the long run but I doubt that we'll ever stop searching for "the" thing which will make life just a little bit easier for all of us.  Of course, if it comes right down to it, like beauty, youth and all those other pursuits, I need to balance our pursuit for "better" with a healthy acceptance of where we are and to remember that what matters most for all our children is that they know that they are loved for exactly who they are right now.

Monday, September 20, 2010


Here is where I am.  Here is where my life has led.  There have been many times in the last few years when I wasn't happy with how my life had turned out.  I was confused, frustrated, angry, hopeless and depressed.  There were occasions when these dark periods would last for days and weeks which would be followed by a more peaceful and positive outlook.  Struggling with where our life had led us and our children, I was mired in grief that was disguised with emotions which I could process more easily.  As the dust is settling and our understanding of autism has ripened, I'm finding that the dark days are more manageable, predictable, and less frequent.  When clouds of uncertainty, fear, anger, exhaustion cast their shadows on my mind, I at least recognize it as temporary and deal with it as best as I can.

There will always be dark days.  There will always be times when I will be crushed with emotion.  The difference is I accept that and I won't let it stop me.

Although autism is incredibly challenging in its various manifestations, it is incredibly beautiful as well.  My children, autistic or neurotypical (NT), are all precious to me.  I am fortunate that my children are capable of affection and of speaking and I try to soak that up.  My heart is filled with love when I think of kissing each of my babies, of holding them, looking at their little hands and feet, seeing their eyes light up with delight.  I am rich.

Recently, fate has offered me clear directions as to which way my life should go.  My gut has guided me and I have listened.  I have recently begun homeschooling my oldest child and, as much as I never thought I'd homeschool my children, I'm pleased about how right this feels.  I feel that my life may have led me to this moment and it gives me peace.

I was raised in a home where the love of learning was ever present.  Even as a fickle, young girl whose attention was often elsewhere (on boys), I was influenced by my parents' constant encouragement to seek more knowledge about any of our interests.  A frequent joke in my family was, "we have a book on that."  Our family library was relatively small but seemed to contain an almost magical amount of information.  Although I wasn't always interested in committing my attention to all the information available to me, I was strongly influenced by my parents to be curious and to seek answers to questions I had.  As a result, I have always loved to teach because it's such a fun experience to share knowledge about our fascinating world.

Now, I have children who love to learn in ways that I never did as a child and, frankly, I'm addicted with teaching them.  After events made it very clear to me that my oldest is not ready for "school", I have reanalyzed what teaching and learning is all about and what going to a school really is for any child.  Although I'm a big believer in a school setting for most children (my other children are in public school now), I'm also a big believer in not trying to force a child into something that clearly does not fit.  Until I find a school which can address his autism and his giftedness, I will direct his education from home in a manner which doesn't teach him that there is something wrong with him and will instead allow him to blossom.

As I ponder my journey over the last year as well as where my entire life has led me thus far, I'm energized and determined.  Things may be rough at times but my path is clear to me and I look forward to giving all my children an exciting and enticing learning environment similar to the one in which I was raised.
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