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.