Putting a face on autism March 2015: The Rodriguez Family

Every new family that I meet and get to know seem to always amaze me by just how ordinary they all are in an extraordinary sort of way.  We each have our challenges, but those challenges are faced with love and commitment that is only evident in a situation that is like that of being an autism parent.  The Rodriquez home was just like this and I remember pulling up to where a skateboard and basketball hoop sat in front of their modest home; their yard was full of the petals of a flowering cherry tree nearby.  As I walked to the door I was greeted by a young man, who I later learned was the younger brother of the Juan Rodriguez. Everyone, except Jordan, was sitting on the couch in front of an enormous television.  The light from their sliding glass door softly illuminated the room and I sat down on the couch next to Adriana, who I had been looking forward for some time seeing again.  We had met previously at other functions that were hosted by mutual friends of ours.  Although we didn’t know each other all that well, our bond that we share comes from communal experiences of being autism parents.

It is a lonely place sometimes when no one understands or knows what it is that we face every day and I gladly welcomed her long ago into an un-judging environment.  We all are doing the very best we can in a situation that is seemingly impossible some days. Autism parenting is often frustrating and we do our best to walk through it the best way in which we can.  Until a person has lived this life they cannot know the struggles that are faced in a world that is slowly becoming aware, but often not quickly enough and judging eyes and comments sometimes still follow behind us.   

Before we began our interview I was approached by the youngest family member who made his way over to me and sweetly took my hand and looked into my eyes.  Little Julian immediately captured my heart and his little smile set the tone for the entire rest of our interview and he even would steal the show as he managed his first real steps several times throughout the course of the next hour-and-a-half.

As I sat down with Adriana, I was immediately struck by her openness and her voracious desire to get her son the intervention that he needed to thrive in this world.  Jordan is a strikingly beautiful boy and as I looked at his massive dark brown eyes surrounded by thick black lashes resting over a sweet smile that seemed to radiate through the entire interview and I just thought, “This child is beautiful.”  It wasn’t just his physical beauty, but this special little light that seemed to shine through and make me smile with him as if I might be part of his little world.  My presence was a disruption and he struggled and was obviously stressed by me being there.  New people and interruptions in the life of an autistic child can be traumatic and the seemingly ‘bad’ behavior is really his way of trying to cope and understand his environment. 

This was the first interview that I have done where both parents were present and I watched Juan’s face as he listened intently to the questions that I asked and the answers that his wife was sharing with me and I knew at once that I could see a tenderness and desire to provide for his family written all over his face…and there was something else as well.  It was guilt; guilt that he could not help as much as he would want to due to the requirements of his job; conversely Adriana showed similar emotions as she struggled with the rigors of trying to raise their very special boy and desiring that she know when her husband might be home.  I marveled at their willingness to be open about their mutual dilemma.  Like most autism parents, the Rodriguez’ feel a little detached from the world and even before they had the autism diagnosis they had been arranging their lives in a manner that many people who had been living with the knowledge that their child was autistic for a long time.  So many families face this challenge as it takes more than one parent to go shopping, help with household duties, and just too master activities of daily living.  Sometimes the idea of a shower is just something that cannot happen while on one’s own.   

  

We then began talking about their journey with autism and how it had changed and molded their lives; this was when Adriana shared with me that they had had no idea previously that their son was on the spectrum; however, she knew that there was something and she reached out to their pediatrician inquiring about the concerns that she had.  Time and time again she was ignored, “Our concerns about Jordan not speaking or communicating at one, two, and three (years) went unheard and we were often told that kids are different and meet milestones at different ages.”  Other issues that occurred at that same office she realizes now should have been a red flag for his pediatrician, “He was two years old at the time.  When the doctor came in she tried to look in his ears and he started to get up and kick his legs…” The female doctor seemed to not recognize that this was atypical behavior and instead placed the blame on Adriana for not using proper discipline on her child.  Unfortunately, medical doctors can be just as uneducated about autism as the common lay person and sadly her reaction to blame Adriana is one that is often made in error by many people.  It is a hope that more pediatricians and general care providers are educated to watch for signs and listen to parents when they have concerns.    

It was not until they moved to the current town they live in that an even harsher reality came to light.  Apparently the lack of concern over her son’s speech and behavior weren’t the only items of neglect that occurred; it would appear that no notations had been made in Jordan’s files about his progress or development of any kind.  It was also at this new office that the word autism and her child were placed within the same sentence for the very first time.  The moment is one that she remembered well as she sat in her car and puzzled and fretted over the enormity of it all. One little word that she had scarcely heard of was now changing the format of their lives and the direction that they were traveling.  She grieved for just that time in the car committing to herself and her child that this would the only time that she allowed herself time to feel like this as she immediately knew that from this point on that she would do whatever it took to help Jordan.

That night she went through the various websites educating herself about autism; the signs were all there and she began to become angry with herself for not seeing it sooner.  Yet how could she?  She did not even know what it was and the physicians that she had trusted had not heeded her concerns; they had failed her son.  However, as with every good mother who loves her child, she could not help but feel responsible for not seeing what she believed was plainly there.  There was no way she could have seen the signs; she just did not have enough information or enough support from the medical professionals that should have been there for her.

The journey is just beginning for this family and they work together to try to make it all work out together.  Earlier I mentioned that I had seen Juan’s expression and being who I am I went straight and asked him pointedly, “Do you feel guilty about not being able to be here for Adriana?”  I respect what he said next, “I do, but I cannot always guarantee when I can be home because the nature of my job.  I have to provide for my family.”  The sound of his voice as his words spoke was that of a man that was proud of his job, that he had tremendous love for his wife and sons, and was a man torn between making sure they had the money that they needed to survive and still managing to assist in the care of his son.  They struggle as a couple and he conceded that their relationship had changed, but that he would work to make his family work, “I will do anything for my son to help him.”

Autism has all sorts of challenges and some of those challenges for them have come from living within a combined house; Juan's little brother Hugo lives in the home with them and although they love him it has been difficult to teach him to understand his nephew's specific needs.  In the same respect, they have to help Jordan understand the dynamic of having an extra sibling in the home.  The nature of their closeness in ages and their interactions have likely helped Jordan, but it still adds to the already overwhelming situation that Adriana often has had on her own.  And then there is little Julian his big smiles and sweet face is a special addition to their home and Adriana is happy watching him grow; his presence has allowed to really see just how different Jordan was even from infancy.   Even with such a full house, she acknowledges that she is hesitant to accept help or ask for it from other family and friends.  The truth is that most autism parents already know the routine, they know what 'new' brings into their lives, and often they would prefer to just handle and care for their special child on their own.  Some might see it as pride,however anyone who knows what it is like to parent a child on the spectrum, we know it is almost self-preservation.  Parents often feel more in control of their lives and in some ways, as has been described often by others they find themselves living as they are autistic.  It is all about controlling their environment and creating safe and less stressful moments for their children.    

 

As I sat and listened to them talking about their feelings and their story I was extremely impressed by Juan's and Adriana's  mutual commitment for their son; I felt that they were on the same page and that they would persevere through the storm.  Both are very pleased with where their child had come from since the beginning of the school year.  He went to being nearly nonverbal to expressing himself in sentences.   Although the program he is in has helped him tremendously, both are aware and understand that this may not always be the case.  Unfortunately, the town that they reside in is not known for its excellence in special education passed grade school.  I hope that as time moves forward that they will not have the struggles that some have had to face along the way.   I think I will be stopping by from time-to-time to check on this family and see how they are all doing as time goes on.  I am proud to have the opportunity to get to know them and see just how much love that there is in their home.

(From top left and clockwise:  Juan, Adriana, Julian (9mos), Hugo (10) and Jordan (4 1/2))

Part 3: You know your child better than anyone else...

The journey away from public school

We as parents are programmed to believe that our public education system with all of its educators and people with positions of influence (superintendants, school board members, etc.) all care just as much about our children’s educations as we do.  However, as we move forward in time it has become more and more apparent that in the United States that we are indeed failing as we do not even make the top twenty nations for education (all found in online databases through a collegiate library system) and that no one seems to put too much stock into what true learning is.  Much of what is being taught these days is how to take tests created by people that know nothing about education; these tests were put into place to try to monitor and regulate what a teacher is doing in a classroom.  The problem with this is that no one is learning anything, but what they put on the tests; children are no longer well rounded and the motivation that a child has is limited by the expectations of a test whose only real value is in whether someone can pass it.  Of course said tests do not monitor if the child is prone to text anxiety or whether he or she is going to be sick or have a bad day…the reality is that no one really seems to want these tests, but bureaucrats and politicians and I cannot say that they don’t have some other ulterior agenda.   When it comes to budgets (which are often low due to the hard economic strains and in some cases poor administrational decisions) children have long since been replaced with dollar signs and the poorer school districts are suffering for it.

In the case of special education…it has become even more of an issue as children with special needs are left in the back of the group and the idea of ‘No child left behind’ is more about just dragging the child into the next grade without actually giving him or her any sort of practical academic experiences.  For my sons, it was the next to worst thing to live in a failing and financially faltering school district whose income issues often meant a lack of education for my sons.  I will not go into detail which district this is; however, I feel strongly that the story must continue to be told and why it was that a woman that began a career in Public Education would suddenly decide to pull her children in order to focus on teaching them in her home.  Certainly there are arguments made for socialization and that my autistic children are suffering from the lack of programs (as you will soon see there weren’t much in the way of programs anyways) that could benefit them from participating in their local school.  What I saw was regression after regression, horrible IEP meetings where only the bare minimum requirements were approved, and a sinking feeling as the children you love are railroaded by a system that did not value their potential based on the school’s concern for a standardized test that they do not feel my children were able of passing anyways (all actually said to me in a meeting by a former School Psychologist and principal years ago).  Below are a few significant accounts that lead to the ultimate decision to pull my sons into homeschool.

Time hurried on and as I fought each time to get the things that my child needed to thrive I was being continuously told that ‘we are too small a district to afford to meet those demands’ and I would walk away with a sinking feeling as to the nature of it all; the school wanted the moneys that my sons brought to them without actually giving us a reason to keep them in their school.  It was disheartening but I stayed the course feeling that somehow they would have to do the right thing, because how could they not?  It wasn’t until finally going to see the boys’ specialists in Seattle that I was told, “Why aren’t your sons more ahead in their speech?  They really should be further along by now?” and then two days later in another futile IEP meeting that I was told by their inept Speech Therapist (generalized not specialized for autism), “Oh well your sons just really aren’t capable of speech.”  She said in a way that said volumes and was in response to what the autism specialist had said just days before.  Her pride was bruised.  The speech pathologist from the hospital had decided to call and offer help to this same therapist with her expertise and even free aides that were available and was turned down flat, “No thank you.  I have my own program.”  I wasn’t trying to be smug, but my question when I heard this from her (she had been the third therapist in four years, by the way) was, “And how is that program doing for you or for my children?”  She had no answer and actually sort of dismissed me.  She left shortly after that and a new person came in, but it was then that I knew the writing was on the wall.  This school could not help my sons and they had no intention of doing so. 

Through the next many months a series of incidents began to arise and I began documenting every little thing from them not following my suggestions to set up a schedule and use a picture education system to take my sons to the bathroom (effectively un-potty training my youngest son and humiliating my oldest one).  I was continuously told that the kids either weren’t telling them that they had to go or that they were in fact taking the boys.  My suspicions had been raised mostly through the fact my oldest son who never had issues toileting at home and while we were out in public, but seemed to have accident after accident at school.  At which point was treated as if I was either exaggerating and in some cases point blank told that I was not telling the truth of that matter.  Aiden had already reverted back to pull-ups as they refused to keep him out of them for their convenience, but Seamus was ashamed and often cried about it; telling me, “I told them, Mom.  I told them.”  I spent more time in the principal’s office and talking to the teacher than I thought possible, but in the end it was a mistake by the teacher that finally tipped the balance of that scale and the proof could not be denied anymore…

It was as the bus was dropping him off when I saw an animated bus driver scolding Seamus about having an accident; Seamus was in tears by the time I got to the door.  Although the bus driver was patiently and softly telling him that every time he didn’t tell the teachers that he had to use the potty that she had to clean her bus, I could see his humiliation and anguish all over his face.  I helped him off of the bus and walked him into the bathroom to give him a bath and as I was doing so I said, “Oh my Seamus, I promise you we will work on using your words to use the bathroom.”

With tear filled eyes he said, “I told them.  I told them,” and as I was taking his pants off I saw a pull-up that was not a brand I bought for Aiden and at that point Seamus never wore them…and it was so full of urine that it was leaking out the sides and all over the floor.  Proof of what I had been suspecting all along; they were not taking him to the bathroom when they claimed they were (they had been telling me for months they always took him before he got on the bus).  I safely got him in the tub and told him it wasn’t his fault and that everything was okay.  I would fix this.  I will not lie; I felt a fury that burned so deeply that I immediately found myself completely and utterly enraged!  I took that pull-up and placed it in a gallon size Ziploc bag.  Instead of Seamus taking the bus that morning to school I drove both boys to school that day and marched us into the principal’s office where I dramatically tossed the still leaking diaper on her desk.  The look on her face was quite surprised and then immediately turned to distaste, “All of this time I have been coming to you and Mrs. J * and told you that I knew that there was something amiss now I have proof.”

“You really didn’t have to do that, Doni,” she said curtly and I replied, “Oh I really think I did.  My words have been ignored for months and it appears that Seamus’ have been as well.”

By this time the teacher had walked into the office and looked on in horror as she realized what was happening.  The principal looked at her in total exasperation; I could see all of the months of backing the other woman up were taking its toll, “What do you suggest we should do?”

I had come armed and ready to go with a stack of potty schedules for them to use with my sons, the catch was that each time slot had a spot for initials.  Years ago I had learned that when someone signed for an item or had to put their name on something they became suddenly more responsible.  The teacher immediately became defensive, “I am not going to make my para’s sign those.  You cannot make me or them.” 

My response was, “Why?  If everyone is taking him to the bathroom as they say they are then it shouldn’t be a problem.  In fact, this not only will help the boys, but it will make sure I cannot come back to say it isn’t being done.”  The principal actually looked impressed and didn’t wait for the teacher to respond, “I think that it is a really great idea and we won’t have a problem complying with that.”  Victory.  Victory was sweet, but I knew it was just one in the many I had been fighting for over the years.     

It was that spring, however, that seemed to bring everything else into perspective as issues continued to rise with the way the boys’ education was being handled.  My heart became heavier and then the call came and it would change everything; how I thought about the school and about what I saw as homeschooling. 

 

(To be continued in the final part of this series and will share just exactly was the final straw to bring the children away from public education)

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