Tuesday, September 12, 2017

Starting and stopping

I have started and stopped writing a new blog a dozen times; every time I started it my emotions would get the best of me and I would have to stop. Whenever I sit down to write I like to remain as objective as I can be.  I like to be as calm and as reasonable as possilbe, because there is enough outrage and irrational anger in this world that there really just need to be much calmer heads to prevail.  We live in an interesting time where so many people react instead of thinking before they say something and I knew if I started writing about my oldest son and his walking goals any further that I would not be able to maintain my composure.  Without that calmer head, then it wouldn't be anything more than an indignant rant.

Why was I so caught up in so much emotion?  Because, I found my son embroiled in controversy and me once again having my parenting questioned by people who do not know anything about Seamus (or for that matter, me) as a unique individual.   They only knew about the label and that box that they put other kids and adults with autism (and other 'special needs') into.  This box included what they believed.  Which was that my very capable son was actually incapapble of activities like, walking to school and crossing streets.  And again why is this?  Well, it was a 'new' concept to them.  I guess no other parents had attempted this before, perhaps, I cannot possibly say for sure.  Not one single one of them could produce enought data or information to support their reasoning; it all boiled down to 'kids like him' (as quoted by an employee of the district to me when describing the concerns).  The whole ordeal was like beating my head into a wall over and over again without moving a single brick, but for my son I was persistent. I sit here even now, not so angry anymore, as I am surprised by such limited abilities to see passed their own personal limitations.

Seamus' journey wasn't one that I just decided to throw at him.  It was one fraught with over six months of social stories, practicing, discussions, graduated distances from each door until he was able to make it all of the way on his own.  It was months of secretly observing him from behind a fence and from my car window when I waited to take his brother to his school.  It was (and is) lots of worrying and stressing about those negligent drivers and that possible moment (that any kid has done) where he might become impatient and cross without looking for cars.  He had some hiccups and nervousness that could be expected by anyone engaging in a new developmental task, but what I saw most with each completed goal was his growth in confidence and pride in his independence.  But probably the most important stage in this journey that no one seemed to really accept or grasp is that it all began with my son expressing that he wanted to walk to school on his own.  He desired some autonomy and some independence as any young man on the cusp of his eighteenth birthday would want. Understandably, he wanted to feel a little more like an adult.  Who was I to deny him this one thing that he is perfectly capable of doing?  I couldn't do that to him.

I was always taught as a child that I could do anything I wanted to do so long as I worked hard for it and I in turn have always taught my children the same things.  When Seamus came to me and told me that he wanted to walk to school, I said to him, "Seamus, you will have to work very hard to show me that you can do it.  You will have to follow all of the rules and most of all you will have to prove that you are capable of doing it to everyone else as well."  He didn't shirk away from it and he accepted that challenge.

The school year before we had had the support of his former teacher, but this last school year we did not.  We had opposition at every single turn and there were times when Seamus felt so defeated by the comments he was hearing from so many that he eventually started to almost believe what he heard from them.  It didn't stop with him at school.  I was inundated by calls and emails; comments and questions about me as a mother (Trust me, I could have cared less about what they thought of me; this was  not about me.  This was about my son and what his needs and wants were) and about Seamus being autistic.  It was such, that one day I got a call about him allegedly almost being hit in the crosswalk on a day that I found it to be far too coincidental within a series of events that already required my attention.  So, I very calmly said to the person on the other end of the line, "Let me ask you, was the incident Seamus' fault or the driver's fault?"

The response, "I am not sure (said name of a student) saw it, but does that even matter?"

"Of course it matters.  If it was my son's fault it becomes a learning moment, but if it was the driver's fault then it could be any student, it could have been you or even me."

The caller paused, "Doesn't it bother you?  Aren't you worried at all?"

"Of course it does.  It bothers me to see people driving irresponsibly all of the time; I am terrified all of the time, but if I let my fear impede my child's growth and development am I really keeping him safe?  Am I really helping him at all?" there was silence and I continued, "Keeping  Seamus safe now doesn't keep him safe in the future when none of us are left to hold his hand across the street."

I had remained relatively calm most of the school year up and until this point, but I am human and human beings can only endure watching their child being hurt by so many who are supposed to be there to help him before I couldn't leave what needed to be said unsaid any further.  They were worrying about his safety, but managed to do more damage than walking every did to him.  I found myself advocating strongly for my son most of the school year.  I asked him as time went on if he wanted me to stop and every time he said no.  He kept telling me he wanted to walk.  And I carried on, because I realized the significance of all of this.  I had a very capable young man asking me for help him to be able to do what he wanted to do; what he has the right to do regardless of what anyone else had to say about it.  There is no greater service we can do for our children who struggle to articulate their desires to others than to be their voices.  More than that, I am proud that even in the midst of all (as I later discovered) of the things he had to deal with while in his own classroom he carried on when he very well given up.

Most of you reading this do not realize the proximity of our home in conjunction to the school, but if you did (as many of my friends and family do) you would understand just how ridiculous this all has been.  In order to keep my children safe I cannot and will not divulge the local exactly, but let me just say that he only crosses one street, he almost always crosses with other kids, and he (according to one of the students that has spoken to me about how he loves seeing my son walk) looks both ways way more often than the other kids do.  (I cannot lie, the glee in hearing this was palpable.  I have delighted in it and smugly have told myself, "I KNEW IT!" many times within my mind.)  So all of this hullabaloo was being made about a single street by people who I later discovered had never really seen him cross.  I won't elaborate on my feelings here...but I will let you make your own opinions.

This is the beginning of a new school year, there is a new teacher in town, and we are working once again to help Seamus build his confidence.  He is capable.  He proved that to me many times and I have it upon good authority from my student source that "if Seamus shouldn't be walking to school none of us should be...he walks just fine and better than most."  Gratefully, I thank this young person for being a believer in my boy, he came out of his home as he saw us leaving to silently encourage Seamus to walk.  He didn't have to say anything, my son just saw him, recognized him, and told me he was ready to walk.

To preface, my son had been so affected by what was said by people about and to him the previous year that he was afraid to even try this year.  I had been worried it could be a longer start or worse yet not at all, but all it took was a peer who had faith in him to show him just what being a real friend was about.  The very next day he walked it by himself just fine.  I sat from my car with his brother watching from our driveway.  He got to the crosswalk and stopped, looked both ways, waited for the cars to stop, and then crossed that street just like anyone else would.  I mean, why wouldn't he?  Autism should not be seen as a disability, but as having different way of learning what everyone else learns.  It may have taken him a little longer than some (honestly, I am sure some of my over-protective mom stepped and held him back a little bit back then), but he had the motivation and desire to take on this huge step in his autonomy.  It was his choice and I just acted they way any mother would.

Once my boy walked on his own this last week,  I realized I could finally just let last year go.  I could finally write about the huge victory of independent walking done by a young man who I was told many years ago would not be capable of much at all.  He has thus far surpassed those limited expectations.  One of my favorite ways of helping my kids understand when someone has tried to hold them back or bullied them or was unkind has been to tell them, "You know how people say that you have special needs?  Well, his/her (insert behavior, ignorance, bigotry, closed mind, etc.) is his/her special need."  It has always helped them to move on from whatever incident that was being dealt with.  I have spent a lot of time in the last few months telling myself that same thing as I tried to overcome my frustration and anger with those who were involved.

So, to all of those people who would keep those children and adults (that perhaps do not learn in the same way as others might) from meeting their fullest potential and do not believe they are capable...don't you worry.  If you work hard enough and educate yourself you, too, can push passed your own limitations and grow a little more.  Perhaps you will understand that we are all capable of being better human beings all of the time if we want to be.

Thank you to the newer, more open generations for giving me hope that our world has a chance at being a little kinder, a little more considerate, and a little less limited by what the rest of the world would have then believe.

#forwardsnotbackwards I am an autism mom.



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