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)

Where am I now...A year in review of sorts...

I am sitting in my sons' room while I wait for them to fall asleep and my mind is wandering through the events of the last two years.  The struggles, the heartache, the sleepless nights...the days when it seemed like the darkened spaces we were living in might stay darkened.  All the while the smile on my face that the world has seen was my silent stand.  It was and is the symbol of the constant firm belief and hope that things must get better...the smile that hid the tears and refused to accept defeat was my way of telling the events that were so overwhelmingly smothering some days they would not win.  That smile I wore like a shield against what seemed at times like insurmountable odds.

So I sit here, and revel at what 2016 will mean for us; for my sons and for me.  Life is fluid change.  Those changes include ebbs and flows; it is evolutionary and I understand me just a little bit more and about who I am and what kind of mother I want to be...no, not just that...what kind of mother I need to be.  

My world is autism.  I live it.  I breathe it.  I advocate for it.  I have learned to accept it fully and wear it literally on shirts for the world to see.  I am an autism mom.  With that comes a tremendous responsibility that is built solely on the love I have for my children.  They are the most important parts of me...they are the reason that I do everything.  It is why I sit in a darkened room typing out this message.  This message of another triumph in a list of many that seemed to come with just that much more work.  It is sweet.  It is amazing, and I still smile.  

So I sit in this room with these beautiful boys waiting for them to fall asleep...I sit in this room that is in our new home.  For two years I waited for this opportunity and was slowly beginning to think it would never quite come, but that smile.  That smile on my face, though weary some days, remained defiant and I refused to let it dull in spite of it all and for a moment; in this moment the smile won.  We won.

AND so now here I sit at the end of this December...this fabulously chaotic upside down and right side up December waiting for January to come and realizing my smile is still here and the future is so bright.  Watch out world!!!  Watch for big things in the world of autism advocacy, my little family, and for the best year yet to come!  Happy Holidays, Merry Christmas AND a very Happy New Year from us.  

(Interviews coming again soon now that we are moved and settled.  Single parenting is hard; autism single parenting is a little harder.)

 

Second year autism 5K raises money for first responders

Seattle, WA- The second year for Superheroes 5K for Heroes raises money to help educate first responders in the area.  Runners hit the Green Lake area of Seattle to help support an Autism of Society of Washington event on Saturday, July 18, 2015 at 9am.   The 2^nd annual Super Heroes for Autism 5K event was hosted by Road Runner Sports located at 7020 Woodlawn Avenue NE and offered 10% of their sales that day to go to the good cause along with the entry fees of the runners.  Peter Denton along with store manager Sophie Hayde both representing Road Runner Sports expressed that their employer likes to support local community organizations, especially ones that promote activities involving health and fitness.  Although his job entails him to help organize and set up these functions for the area he works in, Peter age 30 spoke of his personal connection this event through his particular fondness for a cousin who is autistic.  It is important to acknowledge the rising diagnoses each year touchs more and more people all of the time. 

The Superheroes for Heroes 5K wasn’t just about raising awareness, but helping to raise much needed funding for specialized training to first responders when dealing with people who are on the autism spectrum.  As the numbers continue to increase for autism diagnoses so do the number of missing person’s cases specifically entailing a ‘wanderer’ or ‘runner’ (terms used to denote the person’s tendency to wander away and become overwhelmed and then lost).  Stories seem dot social media and the news agencies about autistic individuals wandering away from their homes and extensive searches ensue to find them.  With this prevalence, our law enforcement, emergency care providers, and medical professionals are beginning to understand the necessity for specialized training to help them meet the needs of the people that they serve.  Teresa McCann, President of the Autism Society of Washington and professional Behavioral Analyst with over a decade working with children on the spectrum, expressed just how important it was for responders to understand the most common places to look when searching and what is most important to know when trying to communicate with individuals that may not be verbal.  On the list of things, bodies of water and places that children can crawl into to help them calm down from potential sensory anxiety to name a few.

Runners came in all shapes and sizes

At about 8:30am runners and event coordinators walked over to the field where the race would begin and the sidewalks were filled with brightly colored outfits and capes as its participants made their way just the few short blocks away to Green Lake.  From people who were there just for fun to a few serious runners the field of competitors was broad and came in all ages; some were personally connected to autism and some were just there for the fun theme and a good time doing something for the community.  The race started promptly at 9am and soon the trail around Green Lake was flocked with bright capes and costumes amidst the normal sunny Saturday fare of walkers, runners, and bike riders who frequent the beautiful and popular park.  The sun was high and although it was only 9am it was already really warm outside.  Amidst the various employees of Road Runner Sports were a slew of volunteers working together to make the day a successful one.

The Hersts:  Michael, Colleen, Sam (10), Jack (7), and Elliot (9mos)

This is the Herst family.  Young Jack, age 7 (and on the spectrum), was the first boy and 2nd place child runner to finish Saturday.  The family is a recent transplant from Texas and are devoted to raising autism awareness and social education with first responders.

Winner Tyler Towner rounding the corner on the last leg of the race

Maggie Anderson 1st woman to cross the finish line

It was a just little after eighteen minutes that Tyler Towner, 26 years old, ran his way across the finish line to win the race.   Just a short time later his twin brother Evan followed suit coming in second place.  Maggie Anderson was the first place woman, followed by Brittaney Towner who came in as the 2^nd place woman.  First place child and girl, Isabel Rapp-Kopp age 9 and Jack Herst age 7 was the first place boy.   All runners were back to the finish line at about 10:30am.  If it seems there are a number of names that seemed to be the same, there were as both first and seond place men were twin brothers and the second place woman is wife to Tyler.  Other matching names could be seen throughout as whole families came decked out in their capes and

First Place kids:  Isabel Rapp-Kopp (age 9) and Jack Herst (age 7)

Once everyone made it back to the finish line, it was time to make their journey back to Road Runner Sports to participate in the closing ceremonies and award prizes and talk about the race.  Overall, for just the second year this event did fairly well; most annual events usually do not show any consistent turnout for at least the first three as it is a learning process.  The superheroes theme and colorful fun costumes are sure to be a hit in the coming years as well as a great symbol for a cause that is worth the attention.

Tyler Towner, Megan Spivey, Brittaney Towner, and Evan Towner

Tyler Towner  found out about this event through his wife, Brittaney.  She works for an organization called:  Seattle Community Care.  It offers specialized services for people and children on the spectrum in schools and some privatized care specifically to help with issues that are treatable with proper intervention.  They came together in a group of four with both brothers (twins) taking first and second places.

Putting Faces on Autism: Wendee & Lauren

As I pulled into the driveway of the quaint brick building I could immediately sense that this was not just a house, but a home.  Sprinklers were running on the very hot, dry day as I walked to the front door; I was invited in and went into the living room to see that Lauren was playing with one of her cousins, who was very comfortable and helpful with her.   Wendee greeted me with a smile that held a small underlying apprehension, and we walked out into the back by the swimming pool where her mother, sister-in-law, brother, and niece (she was already in the pool) were.  Lauren followed us out and jumped right into the water.  We were surrounded by laughter and by love; it was a really nice communal feeling.  The yard was ample and full of things that said “grandchildren play here.”  I saw a lot of supportive mechanisms in place for a nurturing environment and I understood just how important it was for Lauren to be in this place at this time.  Autistic children need lots of supportive environments that include external family involvement which are not always readily available.  Wendee and Lauren had that support here and I could definitely feel it not only in that playful space, but in the social environment she was in.  This has been one of my favorite interviews thus far and I commend Wendee for her bravery in sharing; I admire her greatly.  This piece specifically will be used to educate as well as talk about this little family; Lauren’s father was unable to participate as he had to work that day, but it is my hope to follow up in the next six months and see how they are all faring.

It was a really hot day and the pool offered some respite and fun for the children.

Wendee and I made our way to a picnic table within view of the swimming pool (later moving to some swings once the children were done swimming) and began our conversation with the questions that I start many of these interviews with:  “When did your first start to realize that there was something different about Lauren?  When did you suspect that she was not developing as other children do?”    And as with many it seems, the pattern appears to be at about two years of age, however; in this case it was hard to convince herself, as well as others right away that there really was something else going on with Lauren.  It is important to acknowledge that this little girl is someone quite exceptional; her differences are masked by a brilliant little mind and a vocabulary that started to accumulate during her infancy.  She was talking far sooner than most children and in fact she was still a baby not even at a year.   Lauren’s vocabulary is immense and she often uses words that most adults do not use with any sort of regularity (or accuracy) and she is using them all contextually correct and often.  I was impressed by her bright little personality as I listened to her play with her cousins and inadvertent conversations with the people around her.  Lauren is high on the spectrum and has an Aspergers Diagnosis.  This is one of the hardest to diagnose simply because people just cannot seem to watch a child like this one and realize that her idiosyncrasies are not poor behavior, but in fact the product of this child’s specific special needs.  It is a frustrating thing for many different children and parents of autistic children, typically, as many other adults seem not to fathom that someone so fascinatingly intelligent could be so completely unaware of certain basic concepts as boundaries, transitioning from activity to activity, and social awkwardness; these particular issues are often paired with other symptoms like sensory issues, and motor skills (fine and gross) all of which are often associated with autism. 

But that is the crux of Aspergers and Autism in general:  an inability to read and understand appropriate social cues in others; i.e. social expressions, tone, and perceptions of facial expressions.  These things do not always register in that aspect of communication for those with autism.  For those with Aspergers, they are distinctly different than their other autistic peers in that they do not struggle with speech.  In fact, Aspergers people often have high verbosity and their grasp of usable speech is incredible, but speech is not all there is to communication.  The interactions between people, their smiles, and their frowns, their silent shifts of body or tone are not always innately discernible by people on the spectrum; the truth is it is as foreign to them as it would be for someone to be lost in a another country unable to speak the language.  There is too much nuance involved with people’s expressions; there is a blatant and natural assumption by those not on the spectrum that everyone understands what an intention is.  It is this assumption that makes humans the ‘x’ factor in a world that is often already fraught with chaos due to sensory issues.  Children and people on the autism spectrum function better with set structured environments as a measure to help them maintain control of the fear that permeates their lives.  People are the scariest creatures on the planet, because human beings are unpredictable.  Imagine not being able to tell what a person’s tone, facial expression, or action could mean?  They live in fear that they will make someone angry or hurt by a wrong action or statement all because they just cannot gage it by what they see in others; often their instincts are to withdraw or try too hard to find a way to relate with others on a similar level.  The best way to be with a person on the autism spectrum is just to be completely and blatantly clear in all aspects of conversation.   

As we sat together, Lauren listened to a stream of classical music; it was soothing and delightful to watch her joy.

Wendee saw these behaviors and with the help of her external family, she was able get confidence in the things she was already noticing from her mother, a retired educator in special education, and her sister that began to notice that there were a few things that didn’t seem to ‘fit’ right; specifically the common thread of lack of appropriate socializations, fixations on specific things, and fine and gross motor issues.  With her parents, they set out for the first appointment with the specialist at Mary Bridge Children’s Hospital where specific and pointed questions were asked of Wendee and of her parents.  One such question that was asked involved whether or not any of Lauren’s actions seem similar to other family members. Both parents looked at each other and immediately said that they saw lot of Wendee in Lauren.  When I asked how she felt about this, Wendee had this to say:

As far as hearing my parents say Lauren is just like me, I wasn’t surprised.  I do see a lot of me in Lauren.  Especially with the sensory issues, I hate loud noises.  My senses are easily overloaded when there are just too many things (sounds, lights, bright colors, etc.) and I have to remove myself from that situation.

Bravely, Wendee shared with me that she suffers from extreme and almost crippling social anxiety which she has gratefully noticed as absent in Lauren.  Although she seems to understand her daughter better than other people in the world, she has acknowledged that sometimes hers and Lauren’s issues can feed off of one another creating environments of high stress for both of them.  As has been shared, many people on the autism spectrum do not innately understand boundaries or how to understand when behaviors might go too far (this is called an inability to recognize cause and effect; Lauren cannot always immediately discern that certain actions can have adverse reactions based on tone and expressions of others during an interaction).  “There have been times that she has gone over to groups of children she doesn’t know and has taken toys from them.  That’s hard…It’s those situations that my anxiety is triggered…I start to worry about what other parents are thinking and not only about Lauren, but also about my parenting.  I tend to over-apologize for Lauren’s behavior.”  These moments of panic sometimes cause Wendee to have trouble tempering her own tone in public in such a way as to not come across too hard; while letting other parent’s know that she does not find the behaviors acceptable.  Parenting on the spectrum is a teeter-totter of trying to help children understand and learn boundaries, while realizing that basic concepts are not readily understood by the child.  Knowing the balance is a difficult one and many parents struggle as society only sees a child that just appears to be misbehaving; when in reality, the child is just struggling to attain an understanding that many children of ‘normal’ development seem to already grasp.  All other parents tend to see is a child that is exceptionally bright not playing right with other children, to Wendee this perception is magnified and she feels panicked to ‘fix’ the situation so that Lauren doesn’t offend anyone.

I loved that Lauren is surrounded by so much family; there was love and laughter. It is so important.

We sat and discussed and conversed many hours and later in messages to one another about how things have evolved for her and her daughter.  Lauren’s father has always been a constant in her life, but as with many families with children on the spectrum Wendee and his relationship has had many struggles along the way.   It is their plan that this summer they will be moving to a larger city as a family so that Lauren can have access to better education systems that are not currently available in the small community that she lives in at the moment.  It will mean a move from the comfortable home that they have known, but a necessary one for Wendee to help Lauren grow into the person that she needs to be and for them to try to make it work as a family.  With such a huge support in her external family, they will not be far away in case they need them.  I look forward to seeing how they have grown in a few months when I do a follow up with them and a companion piece to show where they come from.

Per the usual, I have wanted to help raise awareness about autism.  I love this specific piece because it talks about the biggest issues that many face when on the autism spectrum:  acceptance.  Just because it seems like someone should understand things doesn’t mean that they do.  Autism is incongruent, while many cannot seem to comprehend the most basic of concepts they conversely can understand functions of seemingly more complex mechanisms.  Perhaps the most amazing and frustrating part of it all includes the fact that every single person is so unique that there is no box or standard by which to place them in/under.  It is what makes them beautiful and amazing; it is how they are all unique.   

Near the latter part of our conversations in the last week, Wendee said the most amazing thing about her own struggles to be in the world in conjunction to her daughter:  “I am sitting in the observation room at OT (occupational therapy) watching my amazing daughter and how much she touches the hearts of her therapists and I just decided to go ahead and let it all out…She has come so far!  I am proud of her…”  We all have things that we struggle with in this life, but the amazing things that touch us most often happen while we witness our children change others when likely their lives are so far more chaotic and uncertain than our own.  When our children are brave like that, how can we not find a way to be brave, too?  All it takes is for one person to share something about him or her to help someone else that may not realize that he or she is not alone.