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)

The single father and his 19 year old son on the spectrum

Autism parenting is some of the most helpless feelings that a parent will ever encounter as many parents, especially ones whose children pre-dated the most up-to-date in education, care, and intervention, struggle to help their children become less and less lost in the rest of the world.  With numbers of autism diagnoses on the rise, many times adults on the spectrum are left behind as the focus is on children.  There is still so much need for support, understanding, and solutions for those families that are trying to see what kind of future that their children have on the spectrum long after the see other children seeming to have successes where their child has not.

In this article, Jimmy is a single father to a nineteen year old son that is considered extremely low functioning autistic and he is realizing that his life will likely be spent in perpetual care of his child.  As explained above, there were so many limited resources and knowledge about autism when they began their journey, that his son Kyle has never been able to find his words.  Special Education programs, especially, are often woefully underfunded and children are often viewed as disposable because they are assumed to not be able to go any further; expectations are very low.  In Kyle’s case his autism was exacerbated by severe seizures that he had from the time he was a baby and although his father is uncertain if these seizures were the cause or just made the autism worse he doesn’t really know.  

Autistic children and people diagnosed before this last decade are often being left behind in this world as the focus for intervention is often placed on children in the birth-to-three category.  Recent advances in intervention are helping many of these children to surpass what was believed as possible.  Kyle is a nineteen year old autistic young man; his father Jimmy is a single parent and his primary care-giver.  As with many autism families, employment outside of the home is a challenge and even more so when the parent is on his or her own.  The journey that these parents whose children seem to be left behind, is often one that leaves them feeling bitter, helpless, and extremely alone.  During a series of conversations with this single dad, I began to sense a lot of that as he often relies on the part-time aide of outside caregivers in his home and is a way of allowing him a break so that he can do the things that he needs to do during his day.  Many of these ‘low’ end spectrum children need constant and perpetual supervision and can be very draining to a point that is beyond the comprehension of others that cannot fathom or understand the rigors of autism parenting.  It is more emotionally difficult than it is physical.

During a conversation via Skype with Jimmy on one occasion he turned the camera onto his son who was sitting on the other end of the couch with a remote, a box with some wire coming out of it.  His father marveled over what it is that fascinated his child with these items as they were nothing special or seeming interest to anyone else except Kyle.  If a person that does not have a child on the spectrum were to watch this activity, likely notes of confusion, judgment, or just discomfort would play out on their faces, but most parents have discovered that it doesn’t have to make sense to the rest of the world as long as it does our children.  It is always interesting to me how ignorance leaves people incapable of reaching out for edification on a subject, but it is easier to take what they may not be comfortable with and ignoring it as much as possible.  This is how I see many of our autism children over the age of 13 years old:  forgotten, ignored, not the focus of most of the intervention and research.  Don’t get me wrong, I find it very comforting that so many parents find relief for their children these days and that the intervention (although far from adequate still, the world still doesn’t understand just how much autistic people can do if given the opportunity) is so much better as what is known about autism becomes more understood.

Kyle is just one more child that has entered adulthood that has been looked over, ignored, and basically cast aside.  His parents were not given enough information as to what they could do for Kyle on their own, because there wasn’t enough information to be given.  Certainly information about this subject was more than the decade before, but there just wasn’t enough advocacy, understanding, and awareness when Kyle was a child for him to really be given many opportunities.  In fact, his most of his childhood his parents just felt that he was delayed, they didn’t even know the word autism until years after their journey and it had been briefly mentioned in an IEP. “Up until he began to have seizures at the age of two months old, he was developing as any other infant would. He'd follow things with his eyes and giggle at things. When the seizures hit is when he began a quick and steady regression. I don't know that we really recognized it as autism at the time and we hoped he would get better. I don't recall the word autistic ever being brought up the first few years as much as developmentally delayed.”  It is hard for people with children that are not on the spectrum or that have children with no issues in their social development to really grasp how dire this is.

For Jimmy, in our conversations, seems to understand just how forgotten his son has become.  He relayed one story about a single educator that knew a little sign language and had been working with Kyle on it and he was even using some of it to communicate, “I do wish that they would have continued with the ASL in school, who knows where he'd be now with his communication skills…He always had a difficult time in school mostly because if behavior issues which undoubtedly arose from various frustrations with the inability to communicate for one thing.”   However, as with many schools that do not see the potential of a child with special needs, as soon as she left the school no one really bothered to follow up or continue this education.  He seemed to lose what little he had learned at that point.  That has been one of the vast public education system’s issues is their inability to see potential in children with special needs and the need to invest in them.  Things have changed somewhat, but it is still often the case.  A child on the autism spectrum is often limited by the limitations of others, in this case the school.  Like many parents, the Faris' were relying on these systems to be educated on proper methods to teach out children and unfortunately they haven't been or aren't.  One of his greatest and best dreams for his son at this point would be to have some way to communicate with the rest of the world, but at this point, “I would hope that one day he'd be able to be able to communicate better his thoughts and feelings…My dream would be that he be able to be independent one day, though I know he never will. Also that at the very least, that he can be potty trained.”

Autism is not just about the person with it; it affects the entire family; people in the world do not often see just what it is that families go through daily.  In the US, divorce seems high, but in our Special Needs community there is about a 78% marriage mortality rate of those with a child of unspecified special need; for autism specific it is about 92%.  It is not just about marriages, but the whole family as parents begin to have guilt about the time their child with such great needs takes from the other children.    I think what Jimmy shared shows what many marriages seem to face, “I'd have to say that the first five years of our marriage were probably the best ones, the ones before Kyle came along and changed things. I found that once the seizures started that Kyle then took the majority of our time. He took time away from my other children as well as our marriage. Before he came along I spent a lot more time with my older son doing things like camping and such. One of my biggest regrets is how much time Kyle took away from Tanner and also my daughter when she came along. Time I'll never get back. It hurts to think about, like not being able to say go on scouting camp outs with Tanner because there was no one else to take care of Kyle. He had various caregivers over the years but he's always been such a challenging child that I've really never been able to go very far or do much. His mother was never much help as she was always working. I think that work has always been her form of escaping; escaping from Kyle and his autism.”

On the outside, in the rest of world, people do not understand the struggles and often there is judgment passed based specifically on ignorance of the situation as to the parenting decisions that people with children on the spectrum need to make.  But imagine this…imagine watching your child who seems so detached and lost from the world continuing to spiral further and further away with each passing seizure with each passing day he becomes a little more lost from you. What would you do?  How would you try to help him?  Conventional medications were not helping Kyle and the Faris’ felt like something needed to change, especially after an outburst at the neurologist’s office left them without care for Kyle.  It is sad, but the truth is even the educated people who should know better and understand the situation best can still ignorantly refuse to treat a person’s needs based on their own stupidity.  This is whenJimmy and his then wife   decided it was time to try something new and different...marijuana.  

Below is a video from their local news station:

http://youtu.be/HxMNb2S8Er4

I can almost hear the potential gasps and the outrage of this family seeking such a controversial topic of the day, but what is different about marijuana than the other drugs that have been coursing through Kyle’s veins to curb his seizures and that I might add…weren’t really doing the job.  I cannot say that if I were in their position that I would not have reached out for another solution and another way to help my child.  A funny thing happened though, the marijuana helped to stop the seizures and it helped him in other ways as well, “Once we got his seizures under control with his medical marijuana, he did a lot better behavior wise and also improved in his ability to receive and understand instructions.”  This help didn’t come in time, though.  The Faris’ marriage ended through a series of events likely exacerbated by the years of stressful living with a child with severe autism.  Lack of support and lack of enough alone time together created a recipe for failure and ultimately divorce. 

It has been difficult on Jimmy as he has always been the sole care provider for their son and the two of them are often on their own together with only intermittent weekend help for him to allow him to have some time away from.  It is difficult as many parents with children on the spectrum are shut away from the world and often left isolated due to their circumstances and lack of community and family support.  He has found solace in trying to focus on him through exercise and other supportive meetings outside of the home when he is able to go.  It is a lonely job that he has and he realizes it may continue to be one for a long time to come.  Statistically, single parents of children on the spectrum will either jump from relationship to relationship as they try to find a person that will meet their family needs or live on their own trying to function within the constructs of society while still being available to their child, “[The hardest part about being a parent to Kyle] I would say is the communication barrier and not always knowing why he has some of the behaviors that he does, like when he acts out by kicking and screaming and throwing whatever he can get his hands on across the room. Also, all the time that he demands, you can't just leave him alone and expect him to take care of himself. It's a constant job; you have to be with him at all times. The only time I get a break is when he's at school or has a caregiver or is sleeping, and even with all that, you never know. I get calls from school when he's having issues, I help the caregiver if need arises due to behavior, and he wakes up during the night, usually more than once and needs attention…” 

These are things that Jimmy does willingly because he loves his son, but the truth is there is a reason that people who work with children and people on the spectrum have such high burnout rates, or that marriages dissolve, or that siblings of these family members either end up with unusual problems or seem to have such a high rate of success:  this is not a job for the faint of heart.  Kyle's needs haven't been all negatives, he enjoys taking car rides, singing, and bike rides in his special trailer which his father enjoys doing with him.  It is so much more than that.  It is so much more than that.  It is a life.  It is Jimmy’s life and likely one he will have to undertake for the rest of his.   Now that is all the product of love and willingness to stay the course for his son