'Tis the Season

Every day since the tree has been up, my youngest son has walked over and turned the lights on, played Christmas music for about twenty minutes while watching the pretty lights all around the it.  His brother occasionally has walked over and adjusted ornaments that just do not seem right and he checks the other lights and decorations around the house to make sure they are operating correctly.  He has played an integral part in putting everything up and has for many years now.  I get a lot of satisfaction as I see their eyes light up when they see the tote full of jolly decor being dragged out of the closet.

It has been such a delight watching them engage and participate in Christmas these last three years, especially.  To be honest, since the divorce these last few Christmases have been sparse.  They have been humble and most importantly...they have been amazing examples of what Christmas is supposed to be about and my sons are who have truly shown me how to appreciate this concept.  

The first year I felt really guilty and sad that we couldn't do as much as we once had, but by the second year I realized just how little it takes to bring my sweet sons joy.  Their truest understanding of what makes Christmas...well, Christmas had nothing to do with things, but with feelings.  It has nothing to do with opening presents, but by opening their hearts.  

There is a huge misunderstanding about those on the spectrum that they lack empathy or do not feel the same things that everyone else feels.  The truth is, they likely not only feel as we do, but much more profoundly.  They even can sense our emotions emanating from us in ways we may never understand and the seeming apathy that they appear to have towards others is really an inability to articulate and communicate their emotions to the rest of the world.  However when they are able to, simply wonderful things happen.  I have seen it and I revel in it.  These last few years have shown it.  

Christmas is supposed to exude the most basic of all feelings:  Love and joy.  The songs we sing and the traditions we share are all based on those core feelings.  Although for most ASD children and adults, the holidays can have some harsh sensory effects for them, I have discovered that most of these discomforts can be helped just by teaching about the seasons, months, and the holidays that coincide together.  Preparation for those stressful times helps to abate those anxieties and even to work through the sensory issues that happen (essentially they can see it coming and brace for the storm so to speak).  I highly encourage parents to set up a calendar time and talk about it every day.  It really helped my sons.  

Now, both of my sons have embraced and love all the holidays.  They have definitely come a long way when dealing with those things that overwhelm them.  Most importantly though, they have taught me that less is indeed more especially during the holidays.  The onset of the first sparse Christmas  showed me this.  It showed me exactly how special it was to truly enjoy and embrace those things that actually matter:  Time, effort, and love. 

Our celebrations have been magical, they have been sweet,

and they have been full of so much love that I don't think I want it any other way.  Although, this year Christmas has been their Dad's turn with them, we are spending the break from school having adventures, having fun, keeping our life skills schedule, and the morning routine of enjoying the simplest and sweetest things like turning the lights on the little tree and listening to the carols that we have listened to for so many years.  We are enjoying and sharing the intended spirit of the season; we are sharing those feelings.  

To me, these are the greatest gifts and the best parts of my life with my sons.  To me this is what Christmas is supposed to be.  I am humbled and thankful for the joy that they bring with them.

So from the three of us to all of you we want to wish you a very Merry Christmas, Happy Hanukkah, Happy Kwanza, and all of those special and amazing holidays shared at this time of year; and is my wish that we all carry the spirit of the season to hold us through the new year.   

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.  

Lessons still learned...

Although I have seen many cases of discrimination, ignorance, and negative behavior directed at me and my sons over the last decade-and-a-half, I am only recently a single autism parent (these last two years) and am now seeing a whole new side ignorance that I had been previously unaware of.  Just like anything else, I am taking this as a learning moment for me and potential educating moment for the rest of the world.  

Even if this particular incident happened on a date; I feel like the sentiments of the person who sat across from me are likely much more broad and often felt by more people than we may be aware of.  To preface this I am very, VERY open about my sons in every aspect of my life; I am not ashamed of them in any way.  I figure anyone that comes into my life whether they are a new friend or a potential romantic interest that they will know about my sons, my plight, and they will learn (if they are open to it) about autism.  In the interest of protecting my blog, me, and especially my sons I will refrain from using the individual’s name, whose particular behavior still mystifies me weeks later.  In this instance, this “man” (HEAVY air quotes) was made very aware of my sons and we had several discussions pursuant to meeting about my kids and what I write in my blog.  Mind you, he never asked for a link to read this blog (I did offer to share it with him to no avail), or even posed a single question about its contents, or my sons in any way, shape, or form.  He isn’t the first to reject a potential friendship/dating relationship with me; I have had a number of men who have just stopped talking/dating me once they found out about the boys, but this person was the first to actually initiate a conflict on a first “date” (I put quotes around the word date, because it was almost like a strategic attack).  I hate it when assumptions are made about anything, and I am not too proud to admit I made some of my own about him based on what I viewed his background.  I never live in regret, but choose to use each experience to educate myself…this is no exception.    

My sons are nearly seventeen and fourteen years old and over the last decade-and-a-half I have seen and experienced various kinds of ignorance in relation to their diagnoses.  With the growth in autism diagnoses and dozens of unfounded theories surrounding the ‘why’ of it all, it never ceases to surprise me just how many people have no real understanding or information about this spectrum disorder.  The subject is often heard these days in the news and there are lots of information surrounding the subject all over the web (when my sons were diagnosed there were just a little over two thousand and some change, now there are hundreds of thousands of them) and yet people seem to continue to be blissfully unaware about it still.  With this being said, I have learned a valuable lesson and a little more about life and people since I started dating again.  Truthfully, I gave up seriously dating anyone within months of the divorce.  I am a completely methodical, rational, realist who took one look at the statistics and averages of single autism parents having/maintaining successful relationships and how low it was (women tend to have lower success than men; the belief based in psychology is that women are typically more accepting and nurturing than men) and decided that the odds for any future relationship just weren’t in my favor.  I have never been a gambler, why start now?  Couple that with the realities of dating in one’s forties and adding the statistical realities that there are many, MANY more women than there are men living on this planet those realities of me finding a person that I will even really want in my life let alone my sons’ lives is like seeking a unicorn sitting at the end of a rainbow next to a pot-of-gold and leprechauns.  In other words, I am not holding my breath (I have sort of talked about this in a blog sometime back:  http://whereaminowhowdidigethere.blogspot.com/2015/01/back-in-saddle-again.html).

At any rate, once most men find out they seem to run for the hills silently, one walked out before the date even began, some have asked if I would be willing to give the boys up (it has happened twice now), and there have been a few idiots suggest that maybe I might be desperate (considering that my sons are autistic,  true story) enough to JUST sleep with them (giggling, yeah, that was never going to happen)…but this last guy wins the Big Ol’ Idiot Prize.  He actually met me for a first date, in a public place, and then proceeded to initiate an argument based on his own limited view of who he thought I was and what my sons were.  I want to share that I had made an assumption (I hate it when people ASSume things and yet here I was falling right into that trap) that because he was an educated guy (degrees, works a state job, and is a parent himself) that he just might eventually be a great friend to have (again…I gave up on actually finding the ‘one’ a long time ago…I am good with friend-zoning right off the bat).   I was completely, grossly, embarrassingly wrong; I am not beating myself up over it, but I am always honest no matter what even if it means swallowing some pride.  I don’t do regret and so I view this as a learning experience and now I understand that a man with a college degree, studying in a Master’s program, and working in a position that sometimes deals with people who have disabilities doesn’t mean that he is able to keep his mind open enough to accept anyone else’s point-of-view other than the one he has already formed.  In other words, I showed up and he had already made a rash assumption about me and about my sons before we ever really met face-to-face.  He had many opportunities before we set a date to read my blog, ask me questions, and most importantly just not meet with me AT all...and yet here we were.  There could only be one reason:  he wanted to confront me and educate me.

 

Within about five minutes of me taking my seat he started in by asking me the two main questions that I get asked all of the time:  Why do I think there are so many autism diagnoses and did I know that there is a  lot of proof that they are all likely snap diagnoses made to mask poor behavior in children?  I answered in kind with my usual pat answers that I didn’t really focus on the why at this point, because my sons were already on the spectrum AND that if he knew my sons he would know that they are definitely autistic.  I hadn’t hardly begun my response when he cut me off and started telling me I was irresponsible for not pursuing a cure, and that if I was any sort of advocate I would be pushing to ‘fix’ my kids instead of trying to get acceptance for them…that my sons shouldn’t be allowed in regular classrooms with ‘normal’ children. This carried on for a few minutes, and then the real reason suddenly leapt from his ignorant lips:  “The benchmark for my daughters in education since they were five years old is to be accepted into (unnamed ivy league school)…don’t you think that kids like yours would cause my daughters to have less success in their lives if they were forced to have distractions in their classroom.”

I have to say, that I tried on multiple occasions to express my point-of-view and he cut me off each time without actually listening to what I had to say.  A number of times the woman behind the bar where we met actually asked if everything was okay, at first I thought she was just doing her due diligence as a service person, but she expressed a more pointed concern when he left to the restroom about his aggressive attitude.  Some have asked and maybe you are all thinking the same thing, “Why did you stay?” 

At first, I almost got up and left.  I was in shock and in complete disbelief that this person actually wanted to meet me JUST to do this when he could have taken every opportunity to just let it go and not meet me at all…but a thought began to formulate in my mind while he was deposing me, “No, no I want to hear what this person has to say.  If this is what he feels, then likely this is running through other parents’ minds as well.”  He might be an unmitigated buffoon, but he was speaking what he felt were ‘truths’.  He was worried that my sons’ could potentially ruin the academic success and in turn future financial success of his daughters by possibly being in their classrooms.  Success, my definition of success is very different than his…not only should kids’ reach for academic success, but success in humanity.  Being a successful human being is far, far more important than going to an Ivy League school in my estimation.  Learning to work with and around those who are different from one another is what is called ‘diversity’ and if he would have taken any time at all to research education he would have discovered that his daughters might end up learning more from my sons than they would otherwise. 

In fact, many educators around the world have found that peer education not only builds the character of a student, but by teaching his or her peers in areas that said peers are weak in, the student teacher can actually gain a better comprehension of a subject and get better grades in school.  They also learn to work with people that they might not understand or like (not everyone can like everyone else; its life.  However we can learn to still work peacefully and successfully together if taught to do so).  Most would call that a ‘well-rounded’ student, but I think that this fellow would likely never be able to comprehend this.  No, I know that he wouldn’t at all, because he wouldn’t want to.  That was evident due to the fact that he kept cutting me off over and over again without really letting me finish my sentences.  I began to realize that sitting before me was a man that had his own series of special needs, and I began to pity him.  He is the much heard of and rarely actually seen in person:  'educated’ idiot.  He was a man, who was likely the face of so many others who wouldn’t have openly said what they were really feeling…he was/is a bigot.  Most of the time people just haven’t had the opportunity to learn about people with special needs, but in his case he is the worst kind of bigot…he had EVERY opportunity to educate himself and chose not to. 

Irony is never lost on me and as he kept telling me how ‘blanketed’ my eyes were because my kids were both autistic and that I was unable to see other people’s perspectives and then he said what was my cue to finally cut him off, say my piece, and then leave:  “You know what your biggest problem is?  You see with blanketed eyes.  You know how you said you wouldn’t date anyone with autistic kids?  That is sort of limiting yourself since no one is likely going to want to date you otherwise. You are blanketing your eyes to what could happen if you were more open to dating a man with kids like yours.” 

 Me:  “Why do you say that?”

Him:  “I know I am not the parent of any autistic kids, but I would think it would mean more support.”

I finally had had enough, “You know, you’re right, you aren’t the parent of autistic kids, otherwise you would never have said anything that you have said to me at all….”  I then proceeded at length (a likely novel’s worth) to tell him how he had no right to say anything about my dating life, what I have been through with my sons, or what I have done for them.  I then got up after that and left, blocking his number on my phone only after sending him a text saying:  “Thanks for inviting me, I learned something really valuable.”  You know what? I really did.

I know that many of you who don’t have kids on the spectrum (maybe even some who do) might be wondering as to why I wouldn’t date anyone with autistic children and I am quite honest about that:  I have two sons who are awesome, I wouldn’t trade for anything, and who I love with all of my heart.  However, they are a lot of work and even if the man I met didn’t see me as a potential ‘caretaker’ for all of our children the ratio of spectrum kids to parents would still be greater in their favor.   Meaning the level of support would be the same or possibly less if being left on one’s own with all children was necessitated.  All children’s care would suffer. 

 Currently, as it is, one of my sons tends to get more attention than the other depending on whoever has more needs on any given day.  They really should have one-to-one care all of the time, but since I am on my own and have limited support I just keep doing the very best that I can (people often suggest state programs, but that is a whole kettle of inadequate fish that I might address in another blog and isn’t worth the yearly four hour evaluation time per child, disruption to their routine to do it, and loss of a work day to waste my time on).  It isn’t fair at all, but these are the cards I have been dealt.  What kind of parent would I be if I even considered splitting my attention between more than the two I already have (1) and why choose to start a relationship/marriage off with the level of stress that having that many children with special needs in the same home(2)?  The statistics, as it is, on marriage mortality for families with a single child with special needs is very high (as I have shared in previous blogs), and I cannot imagine choosing that at all, it wouldn’t be healthy for anyone especially the children. 

Being a parent is the most important role anyone can ever take on and I take that role very seriously. That includes thinking through every possible scenario that could happen or occur while meeting new people that might come into my life and eventually into my sons’ lives.  Some of my friends who hope for the best for me always, think I over-think potential future relationships.  They are probably right, but what kind of mother would I be if I didn’t at least consider the needs of my sons first?  The reality is my sons are not like other ‘normal’ children and I won’t sacrifice them for some possible selfishness on my part.  In my estimation dragging a series of men in and out of my life wouldn’t be fair or helpful to children who thrive on routine.  I cannot realistically see any man being willing to only have a part-time relationship with me until I feel they are worth the sleepless nights and emotional outbursts that their presence could bring me, because no one will meet my kids for at least a year.  That is nonnegotiable.

With that being said, this may have been a date, but I know that there are those parents and educators out there that share his limited misconceptions about introducing children with special needs into mainstream classrooms.  He used the word ‘blanketed' many times throughout his chastisements and aggressive verbiage without acknowledging his own ‘blanketed’ views about things he didn’t understand or even know about.  Then again he didn’t really want to understand either.  After it was all said and done, I still walk away from this taking it as an educational moment for myself and hopefully for other people willing to actually read about this incident.  Because, the reality is if this has happened to me it has happened to others who might not feel confident to share about it.  The average Autism parent often feels isolative and avoids outside interactions due to the stigma and negative comments that each have faced from various people during their journeys with their special kids.  Whether anyone wants to acknowledge it, this is bigotry and we face it all of the time in different ways and from various people sometimes even from people we trust the most.   

I am by no means a perfect person, but I like to avoid snap judgments about people (my sons’ are judged often and I have learned that it isn’t fair).  Perhaps I should have walked out on him as soon as he started his rant, perhaps I should have cut him off sooner, perhaps I could have done all sorts of things to avoid this incident…but in the end I don’t regret it and I walk away from this with a knowledge that not only shouldn’t we judge people for the worst, but we certainly shouldn’t judge someone for the better based on what we ASSume about their appearances and background.  I will definitely be much more aware from now on. Better yet maybe someone who needs to read this to understand they aren’t alone in this kind of treatment OR maybe someone who doesn’t know anything about autism and autism parenting will gain a little compassion and understanding for those that live day in and day out loving these special and  amazing kids on the autism spectrum.  Life should be about becoming a better human being; it shouldn't be about prestige or money...ever. 

 

  

New friends from Old acquaintances

This interview began months before it was actually given, but the true beginnings started years and years before that in a little town in Washington State in a sleepy little Junior and Senior High School.  The first time I actually ever remember Shonnie was when she was in the eighth grade and my family had just moved back from Alaska.  She was a few years younger than I was (I was actually in her older sister’s grade) but one thing for sure there was no way that anyone could really forget the blond, bubbly, and outgoing young woman whose father was not only our school’s English teacher, but the football coach as well.  I was quite the opposite of her in many regards with my  dark hair and  very quiet/shy nature, and I didn’t really socialize much with her because she was a few grades below me (well I didn’t socialize with anyone really)…but that was the thing about this irrepressible little place, although I moved away to graduate from another school it was as memorable as the people who lived there. 

So imagine how remarkable it was that some twenty years later that I would reunite with and discover that someone who I remembered in such high regard shared something with me.  We both shared being autism moms.  The moment we started talking about our experiences in her sister's home for what seemed moments was really almost an hour that first visit and much the same the second visit while I had the interview with her.  I really admire this woman in so many ways.  I am so pleased she took the time to share with me and other families by helping to educate about what our families go through, feel, and have gone through during our time as parents to our beautiful spectrum babies.

As I sat in my car between meetings, I began my interview with Shonnie.  Just as it was so many months ago when we first started talking about our special kids a seamless interaction happened.  It was a conversation that can only be shared between two parents relating with each other about their children on the spectrum.  Her relaxed manner, sense of humor, and basic perspective about how she feels about her daughter is much like how I see my sons.  Of course we are two separate individuals with very different views about certain aspects of autism; we share the most important thing:  Love.  We love our kids and neither one of feels that the other is wrong or mistaken.  We both understand that how we raise our children is built on that love and that our similarities are much more valid and important than the very few differences that we have.  It is true, even when the rest of the world doesn’t want to see it,  that no one can truly understand what it is like to be a parent of an autistic child unless they have one.  People can read about it; they can even try to put themselves in our shoes, but they will never know the hardest parts of parenting our spectrum kids and how those hard times will lead often to the most rewarding and special moments that we will ever have.    

Shonnie is an amazing person all of the way around.  She is bubbly, she is strong,  she is determined, she is full of life, and she is an autism mom.  Like all of my interviews she and I started discussing when it was that her and her husband began to realize that Macall was on the spectrum; like so many other parents the signs began to show themselves at about one-and-a-half to two years old.  Her daughter’s diagnosis then came at three years old which is about the standard age that specialists tend to feel most comfortable making that call.  Macall would be considered mid-spectrum (spectrum is based on verbosity) she comprehends most words in speech; however, she struggles to verbally articulate her own responses to others.  Her use of speech is intermittent and there is some echolalia (she will repeat words randomly after hearing them).  Shonnie believes there might be an element of stubbornness coupled with a likely secondary issue like dyspraxia that inhibits her child’s ability to use her words.  Seeming stubbornness is pretty common with children/people on the spectrum and the use of speech can be based on motivation or their desire or lack thereof to interact with others.  Autism is a socially based disorder in which the person having it often feels stressed by the interactions between him/herself with others, which stands to reason why someone on the spectrum would choose to avoid speech based interactions.  Macall is much like this, but her sweet and gentle personality shows itself in other ways outside of her use of words.  There is an air of whimsy and genuine kindness in her smiling eyes.

It is the issues with speech that seem to sadden Shonnie most as she desperately wants and hopes that some day she can communicate better with her daughter.  Especially those times when Macall is having seemingly unexplained tearfulness and sadness; possibly even pain that she is unable to express verbally to her mother.  There is nothing so helpless to a parent than to watch his or her  child, know that the child is suffering, and not be able understand what it is making her poor child suffer.  And it is in these moments most of all, that she hates autism; Shonnie wants only the best things for her children and Macall is no exception.  She wants for her child to be able to share what she is feeling, not have to struggle with all that she struggles with, and for not to have pain or discomfort.  If she had ability to speak or share her feelings in some way this would help all of those things.  And so she hates autism and what she feels autism has kept from her daughter.  This is not an uncommon feeling for parents with children on the spectrum.  They love their children more than life itself, but hate the disorder that has ruled their lives so very completely.  She loves her daughter in ways that perhaps, much like her daughter, she cannot articulate just how strongly and completely those feelings are.

For Shonnie’s husband, the hardest thing for him is not knowing for sure what to do for his daughter’s future.  In reality, most parents make a plan in the back of their minds as to how and who will be there for their special children when they will no longer be here.  The hope always is that these children will grow into sustainable adults, but with interventions mostly focused on the younger children (as it is important to focus early on) there are very few that carry on after age ten.  We need other programs specified for these autism children especially as they grow into young adulthood.  It is the only way for this to become a reality.  Schools, government agencies, and other ‘resources’ often generalize special needs too severely; they do not focus what things relevant and important to autism programs.  There NEEDS to be autism specific programs which focus solely on helping young adults into independence.  It is because of these 'unknowns' that it is so hard for her husband to make a financial plan for Macall.  They just do not know where she will be in the next six years; or for that matter, where they will be as they age in respect to what her continued needs or care  might be later on.

Macall’s siblings, two brothers, are amazing social models for her and even though they may not see it they are helping her all of the time by being exactly who they are they are, but they are helping her.  Like most teenagers, her oldest brother struggles with his sister’s behaviors and is a little embarrassed at times as he learns to accept and cope with her differences.  While the younger brother seeks always to try various ways to make his sister’s life better and find ways to help her as she struggles with things that others do not.  Both boys love their sister and are finding their way with her; often times the siblings without autism feel this way.  Just like their parents’ they feel a little helpless; which is why many become over-achievers to compensate for their spectrum sibling.  And like many parents Shonnie struggles to maintain balance for them all, and often feels the slight pangs of guilt when Macall’s needs seem to necessitate focus away from the boys.

But as with many families with a member on the spectrum, the needs of their sister and her safety often have to dictate the course of their choices.  Especially since Macall has wanderer/runner tendencies, like many spectrum kids, her home is the safest place for her to be because of this. Shonnie shared a few stories of Macall's elopement with me and they are similar to many I have heard from others and have even experienced with my own sons.  One in particular involved a terrifying incident where little Macall found herself right in the middle of a very busy road with cars driving insanely fast all around her.  What came to Shonnie’s mind, and mine as well as she shared was:  Why would people continue to drive knowing that there is a small child in the road?  Why wouldn’t someone stop and try to help this child find her way home or at least stop the cars from driving passed her?  It had to be obvious that this was no place for a girl of her age, but we live in an age where people are afraid to get involved, so much so, that no one even knows how to be a true neighbor anymore.  This is just some of the things that we face when our children potentially leave our homes:  safety from the dangers that they do not readily understand.  Social media has brought to light many missing autism children’s cases and it is terrifying for those of us whose children are amongst those who wander.  Elopement usually ensues after a stressful or overwhelming episode for our children, which is why it is so hard for us to plan anything from simple trips to the store to harder longer trips like vacations.

As many parents are apt to do, their homes become their spectrum child’s ‘safe-place,’ they often limit visits with people to their homes and most activities are based on the need of the child who requires just a little more.  They work and try all of the time to find activities and things to do outside the home for the entire family.  Is is always their hope that Macall is able to make it through the event…sometimes; many times, they have to come home and depending on the day the plans just don’t happen.  It is these times that Shonnie feels the saddest for her other children, but especially with the move from Washington their network of support lessened.  This is not uncommon for autism parents/families. The lack of support sometimes causes them to isolate a little more from socializing with friends or participating in activities together as a couple.  But they still try and are committed to each other and their kids.

As has been expressed trips outside the home are stressful and like many parents, Shonnie has faced some adverse reactions to her child in public.  Ignorance is the main cause, intolerance another, and it is the families who suffer most.  It was about five years ago on a plane to a family wedding that a fellow passenger ended up making an already stressful moment worse for this family who was just trying to take a simple trip like anyone else would do:

"...I sat next to Macall and Bill sat with the boys. Just before the flight was full and doors were shut, the man sitting in front of Macall's seat turned around, scowled at her and growled, 'Will you PLEASE stop kicking my seat!' I said in my sweetest voice, 'I'm sorry, sir, my daughter has autism and doesn't know any better. She doesn't mean to kick your seat; she's just adjusting herself.' He barked back, 'I DON'T CARE! Control your child!'  I was not expecting that response.  When most people find out her 'misbehavior' is due to a disability, they respond with understanding or at least give me the deer in the headlight look and ignore us from then on.
The doors of the plane were being closed and we were instructed to turn all electronics off.  This made Macall really agitated because she LOVES her iPad and that was the only way to make her sit even somewhat still in her seat. Because she was mad about her iPad being turned off, she started fussing and kicking her legs out, which made the man in front of her even more angry.  So, I switched seats with her, but she was mad about changing seats...she was spiraling into a meltdown and I was running out of options on how to redirect her behavior in such close quarters!  As the last passengers were boarding, another guy walked up to the grouchy guy and told him that he was sitting in his seat and needed him to move. Grouchy guy was NOT happy about moving, made the guy show him his ticket to prove it, but moved...which placed him in front of Macall again, since we had traded seats earlier!  Noticing this, I tried to trade seats with Macall again, which was making her REALLY mad at this point!  (the whole time this was going on, he kept muttering things loudly directed at Macall and me - something about us being inconsiderate or something - and kept looking over his seat with a scowl).
The more agitated Macall became, the faster I started to lose it, and before I knew it, I was crying.  Yes, the situation was stressful, and the grouchy guy was an ass, but I usually don't break down.  In my experience, when a normal human man sees a woman crying, he usually softens a little...not this guy. He didn't care that I was crying.  He didn't care that Macall was crying.  He didn't care about anyone but himself...which upset me even more and made me feel like this epically bad situation wasn't going to get any better.  I was wondering how I was going to survive HOURS on this plane with my dear daughter..." 

People see our children and assume that since they look ‘normal’ or that because our children have special needs it is not their issue to deal with.  If this were true why does the saying go:  ‘It takes a village to raise a child’?  At what point does our compassion for people end and begin?  At some point, people will need to understand that until a cause for autism is definitively found a cure cannot be made and with numbers rising all of the time we all need to realize that this is something that isn’t going away.  In many ways, autism families (as well as other families with children with special needs) face our own kind of prejudice and it can come from anyone at any time and in any place.  In this instance, the behavior of the man likely made Macall's issues far worse.  Autistic people are more sensitive to those kinds of feelings than people often realize.  The fact that she is a child quite frankly makes his behavior completely inexcusable; I almost worry about/pity his children if he has any.  To be that angry over something that no one can control is probably the uglier side of human beings, but my favorite part of her sharing this was that the flight crew had her back; they showed compassion for the situation.  They could have easily sided with him.

Although this man might seem to have a viable excuse for his ignorance, most families who have special children like ours have had to from time-to-time deal with schools whose educators aren’t always open or amendable to changing their idea Of how our children should be taught. These are people who shouldn't be ignorant and yet sometimes are much worse than someone in a position to know less.  I don’t know if they even realize or mean to limit themselves to what they perceive our children of being capable of, but many aren’t able to reach outside their scope of knowledge to accept or change how they do things.  Many have ‘their’ way of doing things and our kids will challenge that; I invite teachers often to throw away any idea of what they thought teaching was and embrace a new way of seeing things.  This next instance Shonnie shares is one that many parents face with public schools.  In a perfect world, everything would always be done the same way for everyone…but what a very boring world that would be (1) and that is just not the way the world is (2):

"...Macall's Essential Academics teacher called me one day & told me she had been battling the principal for quite awhile in Macall's defense on a number of things, but in this instance, the Principal wouldn't relent. She was told that under no circumstances was Macall to be allowed to nap at school, regardless of what the parent (me) had requested. If Macall was allowed to nap, then she'd have to allow ALL students to do it also. She was also threatening truancy because Macall was missing a few general Ed classes (PE, Art & Music) repeatedly. That was ridiculous because those 3 classes had to be adapted for her anyway because she didn't always have the skills to play with her peers (although, all 3 of those teachers did an excellent job of including her in as many peer activities as possible, then let her run the lines, ride a scooter, or whatever else her heart desired, when peer games were too difficult for her). After being given the heads-up, I went into Macall's ARD IEP meeting. Everything went smoothly for awhile, but there was a lot of tension in the room. Anyway, when they brought up the nap subject towards the end, I was very professional, but made the Principal look stupid when I said, 'you realize the purpose of an Individualized Educational Plan is to create a learning environment that HELPS the child learn, not HINDER them from learning, right? That's where the word INDIVIDUAL comes in...it's not one size fits all...that's why there's a meeting & paperwork. She needs rest to be able to learn. Her body doesn't always allow her to get 8-9 hours at a time. Her body doesn't function like a "normal" kid. Autism does that. In fact, sleep issues are a common issue with kids with autism. Are you aware of that? I would be happy to share some additional information about autism if you'd like." She was (angry) and asked me if perhaps Macall was doing it on purpose to get out of schoolwork. 'If there's a medical reason for her to need to take a nap, then we can make a special exception for her, but I think it could just be a behavioral issue.' I remember making a sarcastic remark about after having missed out on a full nights rest for almost 10 years, I'm pretty sure I would've addressed that by now. In fact, I had/have been working with her pediatric neurologist for the past few years to remedy that issue. I would be happy to ask him to write a letter to the school, giving them their 'medical exception'...which I had on her desk the following day. It was ridiculous how clueless & difficult she was about disabilities, but hopefully I was able to educate her a little."  

This particular administrator has since left, but the reality is that so many upper level public education bureaucrats have long since forgotten that these are children, but instead see them as dollar signs that can make or break a budget.  Putting kids in boxes with labels and cookie cutter molds is one way of keeping costs low.  Until we completely fix that seeping wound we will not fix education; many teachers have tied hands and their salaries are so small that they cannot fix the situation on their own.  They also are not able to speak up or make needed changes, because like anyone else they have to keep their jobs.  Many do try, but like any other group of people there will be those bad apples who besmirch the profession, unfortunately.

Although, Shonnie has experienced some negative things from the outside world, she feels as the prevalence rises and more knowledge about autism is made known people are far more understanding than they once were.  She admits that there have been times that someone might still cast a look of disapproval or exasperation, but as soon as they see her signing with her daughter they tend to realize the situation and are more understanding than they might have been otherwise.  It is this reason that I continue to share stories of families, cover the statistics and rate of growth of diagnoses, and to address common questions, or just share the good things that our chikdren bring to this world.  Ultimately, we will continue to face a form of discrimination for some years to come, but it is my hope that as I continue to write these blogs and share that it will help somewhat ‘normalize’ children with special needs.  They are just like anyone else, they are different and it is the differences of all children that we see diversity and the betterment of human beings to learn from each other.

Shonnie and her family hold my utmost respect and she keeps advocating and protecting her daughter just like many mothers do.  They finally have her daughter in a school that she deserves to be in with educators that are unafraid to reach outside of the box and look at alternative ways of teaching Macall.  They all work together to make it happen (as ideally it should be between teachers and parents).  It is my hope that more educators and administrators learn to be much the same way as it will only help the child in the end.

I would like to thank Shonnie for patiently waiting for this article to come out while I was moving my family this last fall, but that is what is amazing about autism parents we know just how hard it is to adjust to change and acclimate to new routines.  Thank you so much.  I have plans to keep moving forward and interviewing families and bring in educators this year to gather their perspectives and ideas for change in the public school system.  I am excited to begin this new chapter of the blog, in my personal life, and for my sons.   

(Photos courtesy of Candis Layton Photography of Texas)