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.