The Horror of Freshman Orientation

   Last night I took my son Tommy to  his high school's freshman orientation and hot dog roast.  When returned home an hour later,  I went into my bedroom, shut the door, and allowed myself a good cry.  I don't usually react emotionally to the challenges Tommy has to face.   I guess I am used to having him surprise me at how well he can handle difficult situations.  Tommy has come such a long way in his development and becoming a high school student will be just another transition he will pass through.  But I have to admit, this time, I am nervous. 
     First of all, the students at the freshman orientation were big!  My son is a good size, but many of the boys surpassed him in height and weight.  Many of the girls looked like they belonged on a college campuses.  It seemed like nearly all of  Tommy's peers had already shed the awkwardness of the middle school age.  As I was looking around at all of these young adults I began to shudder at the thought of the size of the upperclassmen.  All of these students will be passing through the corridors at the same time.  Tommy will encounter them in the halls and in the cafeteria, before and after school, on the campus grounds at one point or another.    What if he gets pushed and shoved?  Will be able to fend for himself? 
     Fears such as these escalated the more I looked around the crowded halls at orientation.  Students and their parents were gathered around tables, taking brochures about after school activities and buying sweatshirts with the school logo printed on the front.  The marching band was playing music while students the color guard were twirling flags.  Groups of friends walked around together, socializing with each other and pecking on their cellphones.  It was loud and chaotic.  I could feel my chest tighten as I wondered exactly how my son will fit into this environment.  How is he going to communicate effectively with all of these people that he does not know, people who do not know him, people who do not understand who he is and what his challenges are.  How will he fit in?
     I remember Tommy's first day of school.  It was May 13, 2003.  He was three years and one day old.  I was terrified when I put him on the bus.  He screamed and cried.  I knew I was making the right decision for him, sending him to a special education preschool class.  Even though he was young, he needed to start learning his basic skills.  It was a rocky start for sure, but with the patience and kindness of his teachers and his ability to adapt and learn, Tommy succeeded.  Transitions became easier as the school years progressed.  I learned how to prepare him for challenges he might face.  We used pictures and social stories to help him understand what he had to do.  Tommy always tried his best, with a bright smile on his face, and surpassed everyone's expectations. 
     During Tommy's elementary and middle school years  I remained cognizant of his educational needs, but I was able to feel more comfortable and relaxed.   I felt like I suppose other parents do, aware of how their children are doing but not overly worried about them.    But that feeling of  calm has ended, for now at least.  The terror I felt when I watched the bus leave my house when Tommy was three has returned.  Deep down I know that Tommy will do fine because he always has, but there will definitely be issues, and worries, and battles to fight and overcome in the high school years ahead.  I know that Tommy is ready, but I am not sure if I am!

    

What I Have Learned from My Son's Annual IEP Meeting

One of the biggest challenges I am required to face as a special needs parent is my son Tommy's annual IEP meeting.  I understand that this meeting is of crucial importance because the IEP document is the cornerstone of my son's education. Academic and social goals for his next school year need to be set.  Measurable benchmarks for his progress need to be established. Important procedures like home/school communication and the number of days a week he will get speech therapy need to be discussed.  It feels like the success or failure he will experience in the upcoming school year will be determined by the outcome of this crucial meeting.  Here are some thoughts about what I have learned as the veteran of twelve annual IEP meetings

As a parent, I know that I am the true expert of my child's needs and abilities, so my input and suggestions matter.   At the meeting it is my job to advocate for my child's interests and I speak on his behalf with a balanced amount of force and reason.  While Tommy's teachers have always had genuine affection for him, they are employees of a school system.  The cold reality is that the school system is a government-run institution that does not care about my son.    The school system cares about educating Tommy, and the children of the city's taxpayers, to an acceptable level that meets legal standards in the most economical way possible.  For students like Tommy, those standards are set in the IEP, hence the importance of the annual meeting.

As the pressure builds and worries mount before the meeting date arrives, it can be easy to develop negative thoughts about what will or will not happen.  It is tempting to approach the IEP meeting as a battleground. You are there advocating for the best education for you son, that is clear, but what exactly are the people across the table trying to accomplish?  Are they there to deny services your child the services he needs to save money for the school system?  Did they meet ahead of time to form a conspiracy against you?  Is this meeting, like most everything else in your career as a special needs parent, going to be a struggle?

This "me versus them" mentality is destructive and self-defeating.  A sense of cooperation is essential to making decisions that are reasonable and appropriate for your child.  While at times I have needed to be firm with what I want for Tommy, I always present my demands in the spirit of a team approach.  I do not expect the school system to do the entire job of educating my son, I will do my part too.  I do not need the IEP document to be so detailed that it becomes impossible to implement.  I realize that while I may feel that I have been dealt an unfair blow by life because I have a special needs child, I know that it is not the job of the school system to make this inequity up to me. I need to sort out all of this negative thinking and focus on the fact that the team of professionals working with my son wants the same outcome as I do- an IEP that provides for an appropriate education for my son.

Another difficult aspect of the annual IEP meeting is that it forces me to confront the reality of my son's disability.  Because I am not by Tommy's side on a daily basis in school, I need to be open to hearing the summaries of his abilities given by the educators, therapists, and social workers who see my son in a different light than I do.  Although I usually agree with their opinions and observations, it is painful to hear anyone say anything less than flattering about my child. For me, the IEP meeting highlights the gap between my child and his age equivalent peers.  The realization of how far he needs to go to catch up is overwhelming. Signing the IEP document can be scary- how do you know for sure that you are making the right decisions?  How do you know you did enough to advocate for his needs?  I am still hoping to discover the crystal ball that will show me the one, truly correct path to follow then I make decisions for my son.  Not knowing if you have made the right decisions causes enormous pressure and self-doubt.

Just as the yearly IEP meeting has caused me some emotional burdens over the years, it has also helped me become appreciative and positive.  At the meeting I am reminded that although my son is behind his peers, he is making measurable progress toward his goals.  Progress in any child's development, no matter how big or small, should be noted and celebrated.  The meeting helps me realize how far Tommy has come when I read goals on his IEP that he has already met or descriptions of his weaknesses last year that are now his strengths. When I review my son's educational goals I am reminded of how hard he has to work to achieve the gains he makes.  My heart warms with pride and admiration for him.

I feel empowered as I participate in the discussion about my child.  I do not present myself as a dictator barking out commands, but rather as an equal member of the team sharing my knowledge about what Tommy needs.  I realize that as a special needs child, Tommy needs multiple exposures to learning activities. I want to know what I can do at home to support what is being done in school.  I am reminded that any child's most powerful teacher is his own parent.

Lastly, I am reminded at the yearly IEP meeting that Tommy's education is constantly in need of adjustment to keep pace with his development.  I do not have to possess perfect intuition and have all of the definitive answers at that one meeting. The decisions that are made can be revisited at any time I choose.  There are no magical services or accommodations that will eliminate the effects of  my son's disability. The IEP is not and never will be a finalized document.  It is a work in progress, just like my son. I have come to realize that it is not my job to discover the one correct path for my son.   It is my job to always be ready to steer him in the right direction.

Using Social Stories to Teach Social Skills

Using Social Stories to Teach Social Skills

 

            Whenever you are in the presence of families with young children, you hear moms and dads reminding their sons and daughters how to behave.  Effective parents recognize that understanding how to read and react to social cues from others in the community often has to be directly taught to their children.  This parenting challenge is magnified for those who teach children with autism how to navigate the social world.  Being unable to follow the thought process of others is an inherent characteristic of all autism spectrum disorders.  All children need to develop social skills to succeed in the world.  Children with autism need to be taught social skills more often, more explicitly, and reminded of them before entering a social situation where those skills will be needed.  Using social stories embedded with pictures can assist in the teaching of social skills to children with autism spectrum disorders.

 

The Many Uses of Social Stories

            Routines are comforting.  Knowing what is going to happen in any situation gives us a sense of peace and control.  Children with autism spectrum disorders lack confidence in social situations because they do not have the same natural abilities as others to read social cues.  It is difficult or impossible for them to predict what will happen at a social function, and therefore they do not know how to appropriately react to what happens.   Social stories can be used to outline the sequence of events to eliminate the anxiety of the unknown.  For example, parents of a child who has been invited to a birthday party can outline the parts of the party (ex. first cake, then presents)  and use this timeline to explain to their child what is going to happen.  Their child then has some idea of what to expect, and can feel more comfortable participating.

            Social stories can also be used to prepare children for situations that their parents know will be particularly problematic for them, like changes in a  routine,  participating in a church mass,  or going to the mall to buy shoes.  These types of social stories can include suggestions for how the child could react to the events that trigger their anxiety and frustration, such as the loud volume of a party or the need to choose another item from the menu if the preferred item is not available.  Social stories inform the child ahead of time of what might happen and provide some suggestions about how to react to those events.  This preparation prevents the child from feeling the fear of being caught off guard and gives him a suggestion about how to react instead of leaving him, already frustrated and upset, the impossible task of thinking of an appropriate reaction all by himself.   Instilling prior knowledge helps to lessen and prevent negative behaviors, like tantrums,  that will only isolate the child and  prohibit social acceptance from the community.

 

The Power of Pictures

            If a child cannot read, parents can use pictures instead of words in social stories.  For example, if a child on the autism spectrum has been invited to a birthday party but has difficulty understanding how to react during present opening time, a social story to help him understand that social situation might include:  a picture of the child himself, a picture of someone watching or looking , a picture of another child opening presents.  This visual can be used to show the child that at present time he does not open the presents, he is watching another child open the presents.  A social story designed to prepare a child to greet a friend at the beginning of a play date may include a picture of the child himself,  a picture of someone saying hello, and a picture of another child, and a picture of two children playing with toys.  Reviewing this social story will teach the child to greet his friend before he begins to play with the toys.  

            Pictures of an unwanted behaviors, like crying and kicking, with lines crossing through them can be included to reinforce that the child that those behaviors are not acceptable in social situations.  Conversely, pictures of positive behaviors and reactions to social circumstances can be included and highlighted.  Depending on the child's needs and preferences,  actual pictures or picture symbols can be used in the social stories.  Digital cameras, the internet, and various computer applications can provide a source of pictures to illustrate just about any situation or event.  Written social stories for children who can read and understand words can be used in the same manner and achieve the same purposes as those embellished with pictures.

 

Preparation is the Key

            After taking the time to prepare a social story to help a child on the autism spectrum navigate a particular social situation, parents should review the social story with their child in the days before the event.  Bring the story in the car and reinforce the message on the way to the function.  Focusing on the pictures will help the child understand the message of the social story.  Keep it simple by writing one story per event.  Do not try to explain too many social cues, expectations, or nuances in one single story.   Using the stories ahead of time and during the situation helps him understand what is going to happen and how to behave appropriately.  The stories are also a good way to initiate conversation  about the day's event and enjoy memories of the fun with your child.

            The extent to which social stories are used to effectively teach and reinforce social skills is based on a child's needs and a family's commitment to producing and using them.  Social stories can written in a general sense to help children in a variety of social situations or can be specifically targeted to reinforce one particular skill in one unique circumstance. Stories written to explain infrequent activities of daily life, such as getting a haircut or going to the doctor, can be stored and taken out when appropriate.   Technology provides the opportunity to digitally create and save these stories, making them subtle to transport and easily accessible and use in the community. 

            The time it takes to create social stories is a worthwhile investment made by parents who want their children to learn the social skills needed to become functioning members of society.  The goal of using social stories as part of a child's education and development is to eliminate the need for the stories themselves.  The goal is to teach the child social skills so he can be involved and accepted in the community, so he can make connections with people and form friendships.  The stories are a means to this end and not designed to be used forever.  The possibilities are limitless for how social stories can be used to help children with autism spectrum disorders understand the way people interact in the world and how they can fit in and become part of their social community.

"The Walk"

I have a confession to make.  I am not excited about attending this year's Family Fun Day and Imagine Walk for Autism, sponsored by the Autism Project of Rhode Island.  I recently  sat down for coffee and conversation with a fellow "mom on the spectrum," and she reluctantly made the same admission to me.  She was not really looking forward to the walk either. 

I am a self-described autism veteran.   I have a fourteen year-old son with autism.  I have been attending the walk every year for well over a decade.   I have always looked forward to assembling my family and friends, proudly adorning our "Tommy's Team" blue t-shirts, and attending the event on the one day of the year when having autism is not something to be hidden but something to be highlighted. But this year  I am indifferent.  It would be fun to go but if I did not go, well, I would not really care. 

When I began participating in the walk ten years ago, my son was only four years-old and a total prisoner of autism.  Tommy could not communicate with any words, threw temper tantrums when he became frustrated, and was not toiled-trained like all of the toddlers I knew.  The day of the walk was liberating for me and my family.  I did not need to worry about how it looked when Tommy rotated in circles while hand-flapping or broke into shrieking wails when his helium balloon floated up to the sky because every other child was behaving in the same manner.  There was emotional safety in numbers for moms like me.  For once, my child was like, not unlike, the other children around him.

At first, I embraced the fund-raising aspect of the walk,  petitioning friends, family, and co-workers to support the cause with donations.  I wrote a poignant paragraph online entitled "Our Little Hero" and raised over one thousand dollars on one of my early walks.    Tommy was making slow but steady strides at that time, and it was easy to admire his tenacity and cheerful demeanor.  I asked everyone I knew to walk with our team, and a huge crowd of supporters would gather each year to support Tommy, to support us, to support autism.  The lines blurred and there was no longer any distinction between the disability and the people affected by it.  I let autism define me and by default, define my son.  I was not simply a mother of a young boy, I was the mother of a young boy with autism.  The day of the walk was our one day to shine, to feel included, to feel normal.   I could not see how flawed and destructive my perception was at that time. 

With each passing year the annual Family Fun Day became larger. There were growing numbers of children with autism and their supporters, most wearing multi-colored and decorated t-shirts with slogans and team names.  The number of caring volunteers also grew in number, as more help was needed to man the food stands and tables with activities and crafts.  There was now music and performances from a karate school.   Pony rides and a reptile display amused the crowd.  Cotton candy and freshly popped popcorn, free frisbees and tote bags, and even a van serving hot chowder kept the participants fed and entertained before and after the actual walk.  Of course, the inflatable bouncy houses and balloons remained favorites. 

It is I and not the walk itself that has changed over time.  I was once a young mother who felt overwhelmed by the enormity of the challenges I faced raising a son with autism.  As the years passed my experiences gave me confidence in my ability to make appropriate decisions for my child.  I began to see my primary role in my son's life as his mother, not as his savior.  I did not have to fix him because I learned that I had no such power.  I was not going to "cure" his autism.  His entire development did not hinge on any single decision I had to make.  I just had to love him, accept him, and do the best job I could to help him grow and reach his unique and individual potential- like any other mother would have to do.  I learned that I needed to let go of feeling burdened by Tommy's challenges and focus on living my life as a mother of two children, as a wife, as a person myself.  Autism was always going to impact my life, but it did not have to be my life.  Autism did not have to define me. 

Only a few die-hard family members and friends from "Tommy's Team" attend the Autism Family Fun Day now, as the novelty of participation has faded for us all.  I no longer focus on fundraising or drawing every one's attention to the challenges we face. People who know me and my family are already aware, and every family has obstacles to overcome.    Attending the walk has a different meaning for me now.  I no longer need to wait for one single day to feel that it is acceptable to have a child with autism.  That acceptance has come from within my own heart.

 

Tommy

I was still in the hospital holding my newborn son when the doctor asked me what I had named him. "Thomas Joseph Marcello," I proudly answered. "Thomas Joseph Marcello," she repeated, nodding her head and smiling, "that sounds like the name of a president!" My son, I glowed inwardly, a president. Why not? The possibilities were endless for my baby!
 

The official diagnosis came three years later, but I had come to know it in my heart before I heard it spoken by the professionals- autism. I was beyond devastated. The life I had envisioned for my child was not going to happen. And so began years of research, therapies, meltdowns, Boardmaker pictures, and watching my son grow up alongside his typically developing peers in a manner that was most untypical. In one of my searches for support on the internet I found an anonomous quote that truly changed my perspective. "Love me for who I am instead of wondering what I might have been like." I let go of the concept of who I wanted my son to be and began to focus only on who he actually was.
 

What I came to realize is that my son Tommy is truly special. He has a heart of gold and a smile that warms the room. He exudes happiness and makes everyone around him smile. Tommy makes improvements every day because he always tries his best. He has earned the respect of his teachers and therapists. I wish I was half as popular as he!
 

I admire the young man he has become and I am so grateful to be his mother. While "Thomas Joseph Marcello" may never be the name of a president, this proud mother maintains that the possibilities are still endless for her son!

Autism Awareness Day

My son is highly functional, but because of his autism, his days are full of numerous challenges, unrecognizable to you and me, that he must overcome while still managing to look "normal" to an indifferent and judgmental world. Autism has shaped our family routines and defined the depth of the relationships that we have with each other, our extended family members, and our friends. Autism has often been the decisive factor in determining where we can and cannot go and if we can go, how we will participate. Autism creeps into our minds as we dream about what the future may hold. Autism reeks havoc on our expectations, forces us to adjust and accept, hardens our resolve, strengthens us and exhausts us. Autism is there when we go to sleep at night and is waiting for us when we rise in the morning. Autism is an enemy that we must make peace with in order to enjoy the many blessings we have been given.  Autism is a force to be reckoned with, day in and day out, week after week, year after year. For families like mine, everyday is "Autism Awareness Day."