The Seeming Elusive Inclusiveness

Throughout history the special needs communities of the world have faced their challenges to reach acceptance and inclusiveness for hundreds of years.  It has been only through the growth of understanding and knowledge over the last forty years though the rate of this acceptance as psychologists and physicians manage to unlock various myths about what these special individuals are capable of.  While the world waited though, many throughout the course of the decades found their homes in some of the worst living conditions that have ever been seen.  Institutionalizing for years was usually the recommended course and most families without knowing any better sent their children off to live in sub par conditions into adulthood if they lived that long.  It was only in the mid-80's and early 90's where we begin to see a deinstitutionalization happen across the United States, (CIRRIE, 2016).  Even when my son was diagnosed at age three, I had a few educators with their archaic mentality who actually used the word 'institution' to me.  One person specifically told me that my son would not ever talk, be potty-trained, or function in public and that the 'best' case scenario would that he would not have to be institutionalized.  I could not even believe it and of course it didn't happen as in the next few years the prevalence of diagnoses grew and my other son was also diagnosed on the lower end of the spectrum (which was based on speech back then; however, since then the standards for that have changed in so many years).  

Even with the reality of what people on the spectrum are capable of and the advancements in interventions and treatments to aid our special sons and daughters to find a more functional role in the world there is still a stigma and a lack of general acceptance by mainstream society.  Autism parents are still working hard to gain this acceptance for our children and even ourselves as our parenting is often called into question by uneducated people who do not understand that our 'normal' looking children are in fact autistic.  This struggle has been hard on many of us, but where it really hurts us the most is when this lack of acceptance and inclusiveness eludes us even among our own ranks; there is even judgement from other autism parents towards each other.  How on earth can we ask for acceptance from everyone with typical developing children if we cannot even accept each other and our own children?  

I speak to dozens of parents, mostly mothers, on a regular basis because of the blog and my openness about the subject of autism, advocacy, and education.  It has become a greater and greater trend that many fear the judgment and comments from other autism parents more than from the rest of the world these days.  I am seeing a lot of blame, questioning, speculating, and severe cases of shaming occurring.  Why?  Because there are those so passionate about their child's successes, their own theories, and their beliefs that they become overtly aggressive when other parents do not accept or participate in this.  One woman I spoke to recently told me, "I used to be on an autism parenting FB page but I stopped because I found that there was enough judgement & negativity to make me feel uncomfortable." this isn't the first time I have heard of this and yet we as a community are asking the rest of the world to accept our lives and our children while we cannot accept ourselves? I am baffled by this logic or lack of it really. How can we possibly expect from others what we cannot accept those among ourselves?

As our discussion continued she then said, "I think it's the area that I am the most vulnerable so I just can't stand subjecting myself or my son to the judgement. I've never cried for myself like I have for my children but when I experienced being judged because of my children's experience...it hurt." I was hurt with her as we continued our messaging to one another; I have felt that pain that not only my parenting is being called into question, but that my sons are too. It isn't a good feeling at all, but I am a really strong personality in that I take that hurt and I decide to do something about it. After our conversation, I couldn't get her words off of my mind and as the days went by I knew that something needs to be said. I am not afraid to say it, whatever judgment comes, I am not afraid to say what needs to be said. So I am calling each of us out as autism parents.

Here is the thing: THERE IS NO ACTUAL SCIENTIFICALLY PROVEN CURE. Period. There is no definitive cause and there is no wrong way to parent our kids unless it is just plain old neglect and it wouldn't matter if the child was autistic or not because that parent would have likely neglected a typical developing child just the same. We are all doing our best and the fact is anyone who is openly bullying another autism parent or judging them, because they (who knows their own child best by the way) aren't following your parenting path with your child is wrong. It is that simple. Any behavior that is not supportive is wrong. We face so much discrimination, judgment, and harsh treatment in the mainstream world that we do not need it nor we should not be getting from each other. I believe in one hundred percent support and specifically make sure I tell each parent I talk to the same thing: I support you; I know you are doing your best and you are really doing an amazing job and I am here for you. An autism mom friend of mine said to me once, "We may not agree on the same things, but we love our kids just the same." It is the truth, we all love our children the exact same and we are all advocating as our parenting instincts and knowledge of our own children tells us to.

We cannot expect the rest of the world to accept our children and us as parents if even we cannot do it for ourselves. The common ties that bind us are love for our children and doing the very best that we can in a difficult and sometime seemingly impossible set of circumstances and I would implore you all to just give each of us a break. We have much bigger fish to fry as we work ahead to help make our children included and accepted by the rest of the world.

Mondays, horns, and a crosswalk

With each stage of each part of any journey there will be times of doubt, there are moments of fear, and there are sometimes just bad days.  We all have them and one bad day a month is the 'usual' for most people, but then they shake it off and move on.  The same should be allowed for students with special needs, and I am finding that that is apparently the exception to the rule especially when it involves tasks that fall outside of the 'expectations' box that mainstream individuals are comfortable with.  Simple things that are taken for granted every single day by mainstreamers are often monumental achievements for those of us and our ASD children or really any child with a special need.  We fight often for those rights and are questioned to an extent that other parents with typically developing children wouldn't be.

This last school year and this current one my oldest son and I have been working diligently on how to cross streets safely.  Its been a painstaking journey of fear, excitement, and worry by both of us as my seventeen year old son has braved through his own anxiety, coupled with sensory issues and a general fear of change (we all have it, but perhaps not to the relative degree that those on the spectrum have). Add in the other roadblocks (some human) that have come from the external sources that have impeded this process, my son as pushed ahead in spite of everything else.  His desire has been greater than his obstacles.  I stand in awe of him (both of my ASD sons, really) most days and am proud.  That doesn't mean that from time-to-time there aren't little hiccups along the way.  One such hiccup occurred for the second time in the last three months.  It has caused me a moment of pause for sure as I work through how to help him deal with the discourtesy of human beings.

Human beings, by far are the most complex and ridiculous things that ever were and yet by all counts mostly decent with a smattering of indecent sorts speckled throughout.  Their biggest downfalls include judgmental behavior, impatience, fallibility, and...ignorance.  Ignorance by all definitions boils down to being uneducated.  Knowing of something or someone is not being educated about it or that person.  Knowing comes from taking the time to really understand through book learning and being interested in how that subject, group, or individual works.  This is how I see much of our world these days and while I live within constant reminder of it through my children, I have seen in it many other ways throughout my lifetime.

On two separate occasions someone stopped in his/her vehicle and honked while Seamus was in the crosswalk (once at him and once while he was in the general vicinity), both times he had gotten his feelings hurt, but it gave him a sensory moment start.  The second time he was coming back after a hefty illness and on a Monday (who likes Mondays anyways?).  Just as he had made it to the other side of the crosswalk and was stepping safely onto the curb a car honked at some of his peers just behind him.  I watched him jump at the noise and then cover his ears while dropping his head down. I could see from his posture that he was struggling a little bit.  I proceeded to inform his teacher so that he would be aware of what had occurred and got several emails back in return about how bad his day was, because of it (mind you the horn was one of three in a sequence of events that can make anyone's Monday a bad one, but it became all about one incident).

That afternoon someone engaged in a discussion with me about this incident and he said, "...well you know he is going to have to get used to it..." that comment stuck with me and I was really bothered by it.  To a degree, I suppose, because he has to get used to the fact that people are insensitive, rude, pushy, and also (after some information was given to me) engaging in illegal behavior?  (Apparently, people are not supposed to honk at people in a crosswalk in our state.)  I have been working with Seamus on understanding that people are not mad at him when they do this, but even so...how many typically developing or 'normal' kids don't like being honked at and potentially this could already be an added moment in a series, and... have a 'bad day'?  How often are they comforted by instructors and parents by saying, "Don't worry it will be alright, it is just a bad day.  There is a brand new one tomorrow," and its left at that?  I know as a parent I do this for my sons, and I hope that they hear it at school as well.

It was not until the next day that I realized just how much my son had taken in what I had said about 'bad' days, when that same child with the bad day sprinted ahead of his little brother and I.  He had managed to get all the way across and was almost to the corner of the building closest to his classroom before we even got to the end of the driveway (I usually try to observe from a distance his crossing to help him learn or discuss mistakes later).  The child who had struggled, woke up the very next day, shrugged off the 'bad' and crossed anyways without a hitch.  On this day his triumphant crossing was a huge 'in your face' to that individual who had decided to offer an ignorant perspective without really thinking about it, but...then again that person was probably just having a bad Monday and everyone is allowed to have one of those every so often without having to be told that he needs to change who he is or that he is wrong about how he feels when someone hurts his feelings.  

My son shaking that bad Monday off is what the power of the human spirit is.  It is about shaking off the dirt from that hole that we fall into sometimes.  We shake it off, climb out, and are better people than we were before.  Human beings have many faults and problems, but we don't give up.  We keep getting up the next day and crossing that street bravely in the face of those who have questioned us or doubted us.  My kids constantly teach me so many valuable things about life and people by just being exactly who they are.  I hope that others take a little something from this and learn as well.  One thing is for sure, I hope that my son doesn't have to get used to people being insensitive, rude, unpleasant, impatient, etc.  I hope as I always hope that people just work a little harder to be better human beings than they were the day before.

 

Who's this Johnny on the spot, anyways?

It's November!!  What?  What the heck?  I am so lost...the months slipped me by and I haven't written all that I wanted to write or shared with all of the families as I had wanted to share, but for all of the autism families out there...this IS what it is like.  This is what it means to be an autism parent...anything we try to get done seems to allude us on a daily basis.  Sometimes the bare minimum is all we can dare to muster.  For a long time I used to beat myself up over this or feel like I wasn't quite making the grade, but after fourteen years as an autism parent I have learned that I am.  I am doing so much more than I ever realized and that comparing my life with the lives of other parents whose children follow the recognized 'norm' was unfair to me.  

The reality is that it's hard.  It's hard to spend over a decade sleepless and exhausted with limited physical help...with a single child on the spectrum.  I have two.  I realized that I had to give myself a break and accept that I was doing as much as anyone else could given the circumstances.  This doesn't mean we as parents with children on the spectrum need anyone else's sympathy.  It really doesn't.  

It means exactly what I said it means:  autism parents...give yourself a break!  You are doing amazing and above all else, forget about what everyone else is doing because that's their lives.  This is our life and we just need to live it the best way we can.  So on those days you think you should be doing more?  I bet you anything that you are doing as much as you possibly can.  

I realize that not everyone will understand this and most will be the closest people to us.  They don't mean to, but they just have no clue.  They have no way to.  They aren't autism parents.  They are what I affectionately refer to as mainstreamers.  They are people whose children fall within the 'norm' for development, most have no significant issues with speech or sensory processing, and many of their kids finally sleep after they reach three years old all of the way through the night.  They will never know the worry of their child waking and leaving their home in the middle of the night because it's what they do:  wander/run.  They will never know the looks that people give or snide comments from strangers about their children, they can likely communicate with their child (for those of us with children who have speech issues).  And above all else, their child will be accepted by the rest of the world in ways that ours may never be.  Yet we manage to make it through our days doing what so many would deem impossible.  

So if you're like me at all and feel like things just keep slipping you by?  Let them slip, don't forget about them...but just let them slip if you need to.  They will get done eventually and likely better than if you would have been Johnny on the spot about it anyways.  

And as for me?  I will be meeting with families soon enough.  Just watch and wait.  There are three in the queue as I write this and one update on the first family I ever wrote about.