2/26/15-Autism-isms

My sons constantly amaze me and while we work together in their homeschool activities.  However, the most frustrating part about educating an autistic child is the apparent inconsistency that occurs.  One day they are all cooperation and answers and following directions...then the next day there is almost no indication that they learned anything from the day before.  In fact, it sometimes feels futile and that maybe they aren't retaining anything at all.

More than anything, we as parents look and hope for successes; we hope for all of the great and wonderful things that can happen for any child.  So these seeming setbacks or standstills are discouraging...and then something happens and all if the worry and hard work that we put into our children pays off.  

An example of this would be teaching my sons to read.  I work daily with them and rarely is there any indication that they even know how, but something that happened just the other day seemed to change that all...

I was sitting with my oldest son working on his bookwork; while in the background I hear Aiden saying the lines an lyrics from the movie he was watching...verbatim.  I think to myself:  "Gosh!  He has a really good memory."  And then I continue with Seamus through our lesson not really giving it another thought.

As I wrapped up my time with Seamus, I walked over to check on Aiden and smiled to myself over my child's love of music and Disney when I looked over his shoulder and this a what I saw:

He wasn't reciting from memory, but reading along with the closed caption.  My child whose pure determination to avoid doing anything outside his own desires, was in fact reading!!!  He had been paying attention to me all of those days...VICTORY!!!  There is no sweeter taste that the joy that comes from knowing the fruits of your labors are paying off.  It doesn't take much to make me happy and this; this made me over the moon!!!  

This is also why I find the mandates of schools not to move a child forward in the levels of work according to what children show.  I mean really, it should be common knowledge by now that these children and people on the spectrum are amazing and special and much more capable and smarter than we give them credit for...and that we cannot control anyone that doesn't want to be controlled at any age.  Sometimes part of education is letting go of what you know and letting the child be your guide.  Don't latch onto the antiquated ideas of what should be, but the potential of what could be.  

Putting a Face on Autism One Community at a Time

I will be at each location from 9:30 am until 3:30pm...if you know someone with a family member with autism, please share.  It is my goal to really showcase our autism families and spread awareness 

Putting a Face on Autism February 2015: Los Hermanos Especiales y su Familia

After answering the door, Delessandro sat on the couch; little Carime was in the kitchen looking curiously at me as I came into their new home.  This little family has been through a lot in the last few years, but they always seem to keep pushing forward.  It is just like any other home one might walk into where the living room and the kitchen and dining areas are all connected; and the layout of the home almost seemed like a perfect example of its members.  Mathias was in his room drawing and Martinique was getting ready for her day in hers; Cande was attending a memorial service in town.  With all of the directions that everyone was going in they seemed just like the architectural layout of the home:  they were all still connected.  They are connected by love.

This home like many these days hold that of a blended family and this one specifically is bilingual:   English and Spanish.  The bilingual element seemed to greatly affect the dynamic of the home as I found myself speaking in Spanish and often receiving the answers in English from the children.  There are five immediate members of the family and another waiting to be born.

As I sat down with a very pregnant Martinique to discuss the two very special boys in her home it was clear to me that she had carried the burden on her own for most their lives without much support from the people around her.  From her first marriage, to her own family; this woman has struggled to figure out how to help her children to develop and grow basically on her own.  Most autism parents, when they realize that there is something different about their child, feel ignored by many people around them:  doctors, educators, and family.  This is her journey into discovering autism and how it has affected the family and her life in unique ways.

Matthias' drawing has helped him immensely to grow.

She began with her oldest child and how she noticed the various things that stood out about his early development.  Matthias from about three months old he started lining objects up by color, size, shape, etc.  Most of what he did seemed pretty amazing to others, but she was not sure if he was just picking up on such skills from the other children in her in home daycare or if it was something else.  By the time he was about fourteen months old other amazing things began to manifest themselves as Matthias started communicating through spelling; he would use food or Legos and his first intelligible word was Superman. I remember thinking about the large size Superman action figure on his dresser as she shared the story with me.  Aside from the seemingly extraordinary skills he was displaying he only started really trying to use speech at a year, but then stopped again at eighteen months completely.  It is common to see what is known as a regression at these ages and also why it is hard to really want to put a diagnosis on a child, since they seemed to do amazing things previously. 

Delesandro loves interacting and engaging with people

She then spoke of her other son, 

who had just gotten up from watching television and was playing with his little sister, and how she realized that he was also struggling in his social development.  With Delessandro it was slightly different than his brother; he did not seem to exhibit the same abilities.  He never really acquired speech until he was much, much older and much unlike Matthias he seemed to struggle greatly with his fine motor skills.  He just appeared to have so many more difficulties than his brother did at the same ages and Martinique obviously worries about this by focusing on ways to help him find success.  She is discovering that his struggles with being able to express himself that it displays itself in his behaviors and they work hard with him to help him to overcome his deficits.  His strengths seem to lie in his ability to enjoy the company of others (as Matthias struggles with this) and the ability to hone his gross motor skills is pretty remarkable.  Delessandro has a great imagination and listened to him as he played with his siblings during the interview and Martinique expressed his great improvement playing baseball. 

Unlike many conceptions, two siblings on the spectrum do not have to be twins and sharing diagnoses does not mean that they will require the same kinds of intervention.  In fact from my observations the only other things that they even share was difficulty potty training, sleeplessness, and that they are bilingual.  As I sat and watched and listened to them play with their baby sister, their personalities were so very unique from one another.   Matthias was quieter more quirky in his sense of humor while Delassandro was louder and more rambunctious throughout his play.  I was touched by their sister who adores them and her laughter seemed to ripple through the air as her mother and I spoke.  If only more people saw the world as a child does, I think we would live in a nicer world.   

Carime watching and playing

The struggles seemed to continue for this little family and a few years ago another person came into their lives and likely the love of Martinique’s life; although an educator, he is still a novice in the world of autism.  Their relationship has struggled as he has had evident stress over just how overwhelming it can be to raise children on the spectrum, but he has transitioned amazingly and works hard to help them in their journey.  Just a few years ago they invited their daughter Carime into the world and she has been a bright and shiny light for all of them and they expect another son in just a few days time.  Cande is still struggling to understand their little combined family, but he is trying.  He spends time bonding with the boys through baseball and takes time to patiently talk to them while they are having a hard day.  However, Martinique continues to hold her head up and takes nothing for granted; very realistically accepting whatever might come from their relationship’s future.  It is hard for a woman to be able to accept that any might stay when the road to this point has been long and alone.     

In fact, unable to really grasp what the issue was with the boys and not having a supportive network of family and friends around her, she could not seem to get the answers she needed to help her sons.  She recounted an experience from her past before her current relationship with Cande,  “I did research on behaviors and disorders but nothing seemed to fit our experience and my husband at the time disagreed with everything…friends and family continuously told me how to raise my children and what I was doing wrong with them…the struggle to find a conclusion never ended…”  Besides the lack of family support, educators often do not listen to her and because the school that they are currently in has managed to help the boys somewhat, she sees that they could be doing so much more; however, tends to remain silent to keep the peace and hope for something better to happen.  This is common as parents’ voices get lost or ignored to appease a budget or the educator’s inability to acknowledge that the parent may have a valuable point-of-view. 

Of all of the stress from the schools, perhaps the hardest has come from her family.  It really is a common thread amongst the people closest to autism parents, because they are just that…too close.  They cannot see what is really happening as the child seems ‘normal’ and in cases like Matthias’ have specific gifts that fall out of the realm of what society conceptualizes as possible for children with special needs.  That is just the nature of autism as many of the people who are, are brilliant and beautiful.  Family just does not want to believe what is happening; it is too painful for them.  I sat heartbroken listening to her, but understanding what it was that she was going through as I have been there as well.  It is reason one that autism awareness is important and why people need to be educated on how to better understand what the parents are going through.  The journey need not be so lonely.

This lack of understanding and support then leaves the parents of these remarkable children feeling very alone and overwhelmed and often helpless.  Martinique is no different and I could see the wear on her face as she shared her experiences with me.  There is evident pain as she shared multiple experiences of her parents and siblings blaming her or expecting her to do more for the children without really helping.  Since their diagnoses in 2013 (after years of concern and questions) for her sons at the ages of five (Delessandro) and seven (Matthias), things have gotten a little better as if the proof of autism has helped to quell some of the issues that people have had in the past with her parenting, the marks of the pain are still there though.  Not all wounds heal and the scars remain long after the damage is done.  They are written on her face and in her voice even as we spoke that day.

She admits that she tried to deny what she already knew about her sons for a time only

because it was easier to do that than fight everyone else, but she is proud of where they have come from.  Both of her sons are high functioning and although they struggle in school she realizes that they could have a way worse life than they are having right now.  And like most parents she feels badly that things seemed to have been in such a state of flux over the years.  However she has been surprised at just how much they have adapted in a positive way; showing that although routine is important to autistic children,  it also important that children are given the opportunity to learn from an environment that isn’t always settled right away.  Life is messy and we do not have the ability to always control circumstances, but we can control how we handle it.  It is no different for a child on the spectrum.

The life of an autism parent is always one that will be extraordinary and when asked what she felt had changed her most she said this, “I have come to realize I now live as though I, myself, have autism.  I find myself thinking ahead for the boys and planning and sometimes stressing…”  It’s the love of a mother as she tries to put herself in their place and to help them in every way that she can.  The journey is just beginning for her as a fresh diagnosis will open doors and yet still closes others, but after meeting with her I think that she will be able to take those things as they come and find successes. 

Matinique patiently explaining why we were taking pictures of them

Part 2: You know your child better than anyone else...

Don’t be afraid of teachers, school staff, or administrators; they are people too.

The journey with the school district in my area didn’t end with the Occupational Therapist who went awry and likely was a forewarning of the future struggles that were about to begin in a life that I know now was never going to be ordinary or boring.  How could it with such extraordinary children?  The world often is at war with all of the things that people cannot understand or that seems scary to them; autism is one of those things that seems scary to a lot of people and that is why it is often ignored or denied by some parents when they first start to see the signs of it in their child.  I want to preface once more that the incidents in this series are ones that likely do not happen as often or with such voracity, but they have happened to my family none-the-less and it is important to share it so that things like this stop happening in a Public Education system that was not designed for children on the spectrum.

The real troubles didn’t start happening until Seamus was out of the Early Intervention Preschool program and when we started the journey into the his kindergarten year (a decade ago now), it became clear that there was an antiquated idea of what special education was and that the parties that pushed this idea held onto a narrow point-of-view.  I can tell you that the person who seemed the most determined to create the most issues was the former psychologist/special education coordinator at the time  who use to say said things like this to me:   “If it was good thirty years ago; it is good now…I don’t know why people have to go in and complicate system that has worked so far.”  It did not matter that the past measures for most children with autism was usually immediate institutionalization that thirty years prior, or that the understanding of how to educate children with pervasive mental disorders had changed progressively since then (and was/is still progressively changing). 

My very presence irritated her and often when I made suggestions or pointed out the newest in educating autistic children I was often talked over and ignored.  What incensed me the most was that her apparent lack of any sort of respect for me as a mother or as a fellow educator.  I had worked for the school district some years back and that I had a background in special education, but she always looked at the youthfulness of my face and assumed that I wasn't intelligent or knowledgable.  Let’s throw all of that last bit aside.  Whether I was educated or not, that woman essentially worked for me as my taxes played a part in her paycheck and that being Seamus’ mother made me someone that deserved respect.  Time and time again this woman seemed determined to break me down.  I would later come to find out from some of the school's educators and other parents that she sort of liked to intimidate people into submission to get her way.   I look back on her efforts as a colossal waste of my child’s valuable time; we as parents in conjunction to educators should be working for the child and not what best suits us or our specific personal agendas.  If you went into the field of teaching or working with children thinking that you were going to have it easy…you got into the wrong job.  AND if you thought that your pride was more important than educating a child in the best way possible…again you chose the wrong job.

On one such occasion while in an IEP meeting alone with both of my sons (Aiden was about two years old at the time), they were discussing what the goals for Seamus were going to be when I stood up and took Aiden down from the back of a chair that he was climbing on.  I am the mother of two children on the spectrum and by being any mother it meant that multi-tasking is part of the gig.  Just then this woman turns to me as if I were a fidgety five year old who was not paying attention in class and says, “Were you listening to any of that Doni?”  The tone with which she spoke was that of complete disrespect and I turned to look at her and calmly replied, “First of all, you will address me as Mrs. McCullough when you are speaking to me.”  The look on her face was of complete shock that someone had actually stood up to her, “Secondly, I have been doing this mothering thing for quite some time now and am perfectly capable of doing more than one thing at a time.”

“Him climbing up on things isn’t going to hurt him; you need to be paying attention,” she said haughtily, “And I don’t see why I have to address you as Mrs. McCullough, you don’t have them call you that.”  She said the latter as she broadly gestured to the other people in the room.

My response, still calm, “I refuse to allow my child to be in any position where he might hurt himself regardless of what your opinion is AND they can call me Doni because I know they respect what I say.  If you aren’t going to treat me with the respect I deserve; I will command it.  I will not answer to you unless you call me Mrs. McCullough and I would appreciate it if you did not speak to me as a child.  Your degrees and title do not intimidate me.”

The other people in the room were stifling smiles and avoiding eye contact as she scanned the room, but did not say anything.  It was one of the small victories that I had as a parent and managed to get Seamus most of the things that he would need for that school year.  After the meeting the teacher gave me a high-five out of view of the psychologist (she would continue to be the biggest opposition that I would face while my children still attended public school and the most narrow minded person I have ever met) and said, “Oh my GOSH, I will deny it later but that was the greatest thing I have ever seen.  She is just so used to getting her way.  This just made my day.”

At the end of the day, you will always know your child better than anyone else.  Do not be afraid to have a voice and use it.  You are the best and only true advocate for your child while they navigate through the schools.  Educate yourselves as ammunition.  If you are unsure where to start you should be able to find resources for advocacy centers in your area that were built to help you or try to find a local support group where other parents that have been through the schools before can give you some insight as to what you need along the way. 

(this is the end of part 2 of the series:  You know your child better than anyone else…)

(this is the end of part 2 of the series:  You know your child better than anyone else…) .

Part 1: You know your child better than anyone else…

Not enough education can be a dangerous thing

It doesn’t matter what anyone else is doing with their kids or what anyone else is telling you what to do with your child; at the end of the day, it is you that knows your child the best.  As a parent, we often get lost in what’s ‘supposed to be’ and it is usually something that we have gained from listening to what everyone else is saying.  I think that my worst three sources of critical feedback while on this journey have come from educators, doctors, family, and the well meaning outsider with a handful of information that likely you have already seen.  This isn’t my first trip at the rodeo.  I have been an autism parent for a long time; officially as of the diagnosis of my first son, thirteen years.  I feel like I have sifted through every website, read every news article, watched every special I could find, and just plain ol’ observed my kids all in an effort to help me help them.  Most suggestions and interference I take with a grain of salt as I realize that the intentions are meant to be helpful and I appreciate that; however, there are many that have come at a huge cost to our family emotionally.  Autistic children are sometimes difficult to work with, but I have found that the outside world is much more daunting and by far more difficult.  I think that of the many people I know, our particular journey in Public Education is something that most haven’t had to endure.  At least I hope not.

As I sit back and reflect over the last thirteen years of dealing with the schools in the area we live in; it has never been easy.  Educators started coming into our home soon after Seamus was diagnosed; although I am a huge supporter of education and teachers (having a background in Special Education, myself), I began to realize that what I had to say about my son was immediately discounted.  At the time, autism was really just starting to come into its own as more diagnoses were arising…with that came several teachers and therapists that were suddenly thrust into various short seminars and thirty minute courses teaching them the basics.  After which they came barreling in with grand ideas of helping my son without giving any thought as to what kind of child he was; they only saw him as autistic.  Essentially, they came armed with just enough knowledge to be dangerous.  They meant well, but often did more damage than good as they blundered in and began working with Seamus without really considering whether his personality fit the model they were using.  It didn’t.  They were trying to work with a docile child as if he was an aggressive child and in turn they caused him to regress.  It was painful for me to watch and it didn’t matter what I said, they felt that they knew best.  Most of the education they were receiving at the time was regarding those autistic children who have issues with aggression; there hadn’t been enough awareness of ASD at this time to realize just how broad the spectrum was and that like everyone else all children are different regardless of their diagnosis.

On one such occasion, one of the women that came to see us had just got done telling me how she was going to help Seamus by trying some new Occupational Therapy techniques on him.  I watched and was completely shocked at how aggressive that she was being with him.  Instead of patiently and quietly showing him how to bounce on the ball the way that she wanted him to, she was forcing him to sit on it and not gently.  I immediately intervened as the mother, “I know my son and you won’t get anywhere being that way with him.  He does better if you show him first what you want and then repeat it a few times until he understands.”

“Oh, you are just being an overprotective mother that needs to sit back and let the people who know better do their jobs,” she gave me a dirty look and I sat back.  We had company at the house that day and even my friend that watched with me showed a great look of disturbance on her face.  The woman went on, “Autistic children need to be forced; they won’t do it on their own.  You are too gentle and that is why he is behind.”

I was incensed by her response to me and just as I was going to tell her to get out, she forcibly bounced him so hard on the ball that his face went smashing into the floor causing his nose to bleed…would you believe it?  The woman didn’t even stop.  She picked him up and told him to stop crying and that it was okay and tried again.  Of course, Seamus was screaming and crying in pain as blood started dripping from his now bruised nose and I stood up, walked over and removed her hands from my child, “We are done for the day.  He isn’t going to want to continue now; autistic or not autistic a child with a bloody nose isn’t going to want to do any more.” (Just to give you an understanding of the situation, Seamus wasn’t quite three years old).

“You know it is parents like you who make your child worse off than they already are.  I know you love him, but this was part of a class I just took.  All autistic kids respond better to this approach and it is the only way that works,” she stormed out huffily and she actually wrote some very unpleasant things about me that later came back to cause more problems later.  I found out almost a year later from the Early Intervention Preschool he was attending, by that time they had gotten to know me and realized that I only cared about my son and that I was extremely proactive in his education.  But apparently, she had me labeled a resistant parent that was incapable of seeing her child for who he was.  I laugh at it now, but it stung a lot to know that someone’s pride was more important than listening to what I had to say.

I hold no malice towards that woman, but I do encourage people to realize that a single four hour course isn’t going to teach you all that much autism and that autism isn’t the child just a diagnosis.  Seamus is a rare child in that he is about the most gentle, sweet, loving, sensitive person that I have every met and with that comes a long memory.  The woman came back after that a number of other times to try to work with him and he was completely non-responsive.  She was more irritated that the things she had learned weren’t working and that he seemed to less capable than he was before.  He had regressed somewhat; his trust for her diminished and so he wasn’t interested in what she had to offer him.  Autism is a socially based disorder and most children and people with autism are greatly afraid of the people in the world because of our ability to change suddenly in our emotions or actions without any sort of warning.  The woman went from treating him sweetly the two times before to suddenly asserting an aggressive stance with him the next time she saw him.  His immediate defense mechanism was to shut down and withdraw from her completely.

 

Seamus would never quite open up to her again and from that point on it would seem that I was fighting an uphill battle carrying the weight of the entire world's ignornance on my shoulders.  I am sure it wasn't really all that bad, but it continued to add up over the following years as you will see.

(This is the end of part 1:  You know your child better than anyone else)

Putting a Face on Autsim January 2015: Sebastian

-I walked downstairs of the modest split level home into the little living area that Sebastian and his parents share, while two other generations of their family live above them.  As I followed a very pregnant Nichole into their little living area, I see this sweet faced little boy with blond hair whose blue eyes were intently watching a child’s preschool program on the television and immediately was struck by how precious he was.  He looked so tiny in the massive recliner he sat in and his mother spoke gently to him while putting a plate of food onto a little table that was nearby.  It was a feast of cheese, pepperoni, and crackers without really speaking or acknowledging me; he got up quietly and sat at his table still quite in tune with his program.  Hi mother took the opportunity to sit in the now vacant recliner and direct me towards the other one nearby.  I was struck by the comfortable and homey atmosphere and the obvious love that could be felt by all members in the house; even from where we were sitting far detached.  Just like old friends we began our conversation on the subject that brought us to where we were right now:  autism.  It was something that immediately bonded us as parents of children on the spectrum and one of the reasons I am so passionate about teaching the rest of the world awareness on this subject.  The love for our children is just like anyone else’s.

Nichole is a completely down-to-earth, witty woman with a slight bit of iron in her will that likely makes her a great parent and worthy advocate to little Sebastian.  I thoroughly enjoyed our interview during the course of the next hour-and-a-half and was impressed by her honesty in her journey and love that she was so willing to share for that little boy.

Like a lot of mothers with children on the spectrum, Nichole began realizing that there was something definitely unique about her son at an early age.  While discussing her concerns, she hesitated using the word ‘normal’ or lack thereof, when clarifying her meaning as it is a word that many find completely unnecessary or even applicable when discussing their children.  However, she did realize that something was going on when he did not seem to be talking like other children his age; there was a great amount of guilt regarding this at first as she took on a lot of responsibility behind his struggles often asking herself questions like, “Am I just picking the answers out of his mind when he is wanting something…should I be trying harder to make him talk…?”  It just seemed that even while she was working so hard to help him find his words that she watched so many other parents doing less, but their child seeming to talk so much more.  Frustrating is not even a word that can justify the feeling a parent has; helplessness often seems to be better word in this case.

As time went on she began to recognize on her own a number of key indicators that he might be austistic aside from lack of usable speech such as a family predominance, lining up toys in a row, humming, some sensory issues with water, and melt downs (I prefer panic attack, because that is basically what it is) and she went to Sebastian’s physicians with it.  To her dismay, it just seemed like the doctors that they were seeing weren’t really all that knowledgeable on the subject.  He was two years old when she began her concerns; however, it wasn’t until he reached the age of four that any actual diagnosis was made to confirm what she had already suspected.  This is yet another common occurrence in the life of a parent with a child on the spectrum:  being heard.

The day that the small stack of paperwork with his diagnosis came she said she was sort of hoping that there was a fancy certificate inside; not because she was excited that he was autistic, it was because after all of those years of trying to get the world around her to see what she had been seeing:   Finally…finally she felt that she was getting the much needed acknowledgment of what she had known all along.  With a diagnosis it meant she could finally focus on what she needed to do for him to make his journey that much easier.  Sure life is definitely not easy as her child struggles with sleeplessness and some of the goals that she had set for their family before he was even born had to change; but at least now that they knew what he needed and they could move forward armed with this new information.  It was then she knew that she could finally think about adding to the wonderful little family that they already had. 
  

A supportive personal community (external family) is sometimes lacking in the autism parenting world; however, Nichole is very lucky and she very gratefully acknowledged that. Although they didn’t always understand or really know about autism, her parents and boyfriend have played a wonderful part in supporting and offering her aid when she needs it.  Another part of this big, beautiful, supportive family is Nichole’s grandmother ‘GG’ whose bright and warm spirit has help little Sebastian in his journey in a way that Nichole did not know it would.  It touches her heart daily to watch the amazing compassion that her child has for his GG and just how much of a role that she has played in his life.  Nichole even jokingly said, “It actually does take a village to raise an autistic child…” specifically in reference to the timeless efforts by her mother as they jointly take on the tasks of caring for Sebastian and GG together throughout the day; that without their seamless cooperation that likely all of the things she needed to get done might not happen otherwise.

Although raising a child on the spectrum can seem daunting and hard sometimes, it really is the rest of the world that makes it hard on parents to navigate and gain passage to the resources that their child needs.  Working with schools can seem especially frustrating.  Special education typically, and especially in small communities, does not offer the right resources and educators are often grossly undereducated on how to work with children on the spectrum.  She voiced her concerns about his current teacher this year that openly seems to struggle with how to aid Sebastian in his journey.  To her credit, she has apologized for not knowing how to handle his panic attacks and because of this the only real tool that Nichole feels somewhat confident in using with him at home is a special mat that they developed for his ‘meltdowns.’   It has been a hard and a somewhat disappointing transition considering the year before he was getting a little more from the program that the previous teacher was using.  This is just another way that parents feel helpless as they muddle through their IEP’s and hopes that their child is getting the education that they need in a public education system that is not designed to help autistic children. The lack of seeming understanding has created some concerns for his well-being.   If they cannot understand his needs how can they make sure he stays safe?  This is unfortunately the sentiment of many parents with children on the spectrum.

Schools are not the only concerns for parents while the rest of the world still sits in calm denial of the vast numbers of children being diagnosed yearly and as to what autism really is.  So many do not know and it is frustrating, hurtful, and sometimes anger inspiring to realize the lack of compassion in the voices of people who should know better.  Nichole shared a few experiences of the many in her very own words: 

  

“My dad (grandpa to Sebastian) was at work and telling some of his coworkers that we found out Sebastian has Autism.  A few were nice about it and wanted to learn more but one employee said ‘oh so he is retarded’ my dad wanted to jump out if his skin.   He said ‘nope he is probably smarter then you...what are you retarded?’  He finally walked away from the lady and eventually came home early because he was so annoyed with her and the boss noticed it… When I tell people that Sebastian has Autism they look at him and say well he doesn't look like anything is wrong with him. I've always wanted to know what they expect to see. Should he not have hands, eyes, be screaming all the time?”

Through it all:  the lack of social awareness (the nice way to say ignorance), the panic attacks (I simply refuse to call it a meltdown), the public education system, and the sleepless nights (any parent of an autistic child will tell you it’s the lack of sleep that seems to be the hardest) that there are still so many wonderful amazing things about their children.  And some of those endearing things about their children might not even be part of who they are without autism.  For Nichole she told me while holding a very tired Sebastian and rocking in her chair that those things included:   His sweet affectionate cuddles, his love of dancing to new and favorite songs. 

One of her favorites is his amazing love of cars and how he knows the Make of a car based on its sound and that he can look at one of his toy cars and tell you all about it.  Nichole loves that the gift of his knowledge has helped to cement a strong relationship with his father and the two of them are best friends through a mutual love of automobiles.  Then, finally there his unwavering ability to understand how a person is feeling without really understanding how to tell you what it is.  She fondly talked about how he automatically knows when his GG, who is nearing the end of her life, is having a very bad day and he will go and sit calmly with her and just love her to help her feel better at that moment or day.

It is those very things that bring hope to Nichole and that hope includes a big bright future where her son can grow up and do whatever he wants; that someday the rest of the world will let him be who he is without trying to force him to succumb to the pressures of what society thinks he should be.  She hopes that he can find success and happiness; and I think that is a pretty common desire for any parent.  I think that if people can take the time to truly understand and become aware of autism that perhaps they will find that basically we all want the same things for our children.

  

As we neared the end of our interview, for the majority of our time he had occupied his mother’s lap as she rocked away in the recliner; at about the halfway marker he had slid in next to her and had peacefully fallen asleep.  She smiled and said likely he would have trouble sleeping that night, but since he struggled with sleeplessness often that likely his little body just needed to rest.  I couldn’t help but take a few pictures of him before I left.