Saturday, June 8, 2013


It's that time of year once again.  It's the end of another school year for all students, and time to look ahead at what is coming in the fall.  For many parents it is a time of relief.  No more packing lunches, no more early mornings, no more fighting to get homework done.  For others, it is bittersweet.  A realization that our children are growing up way too quickly.  And most parents know that all too soon, we will be wishing that school was back in session, when we hear that the kids are bored, or they are fighting.  But, when your child is Autistic, or has any special needs for that matter, spring is usually the time of year for the annual IEP. 

Oh, the IEP.  A parent's worst nightmare.  For those of you not familiar, an IEP is an indivudualized education program.  So what does that mean?  Basically, it is a blueprint of what your child needs for their schooling to be successfull.  It covers the basic classes, but also occupational therapy, speech therapy, physical therapy, socialization, emotional needs, transportation issues; you name it, your kid needs it, and it is covered in the IEP.  It is a contract between you as a parent, and the school district providing the services for your child.  The teachers and providers list the specific number of hours that they will be working with your child.  They list the specific resources and technology that they will be utilizing.  They even list your child's strengths and weaknesses.  It is a 20+ page document that has to be reviewed, discussed and signed by the parent and multiple representatives from the school system. 

That doesn't sound so bad to you?  That sounds pretty reasonable, that makes sense?  Well, I just painted a very broad picture of what it involves, but I did not hint to what that means to a parent.  We all know that they are coming up.  The IEP is an annual event, so we know that they are right around the corner.  Then the notice comes in the mail.  The few days prior, we start to get nervous.  The night before, sometimes we can't sleep.  And the day of, we are guaranteed to sweat through whatever type of shirt we are wearing.  It doesn't matter if your child is doing well in school, or meeting all their goals.  With Autism, there are no guarantees in life, no certainty that we know what is up around the bend.  Just because your child has been successfull at their present level, does not mean it will translate to the next.  And teachers change, para-pros change, classmates change, your child will change.  So trying to plan for the next year is terrifying.  Do they have to change classrooms?  Do they have to change schools?  Will their teacher change?  If so, how will the new teacher and your child get along?  Will the services provided thus far continue?  Are there life changes expected that might impact their schooling? 

On top of all these questions is the fact that sometimes you have to fight for what you think is best for your child.  You will not always see eye to eye with the people in the IEP.  You might have an entirely different vision of your child's future.  I have cried in IEPs.  I have physically felt ill.  I have seen red and I have felt like I was having a stroke.  I have felt misunderstood, and I have felt my child has been misunderstood.  We have been fortunate the last several years, in that we have been pleased with the outcome of our IEP.  But now the hard part is looking further and further in the future.  At some point, every parent has to have the dreaded conversation, "Where do I see my child ending up?"  "How far will they go in their schooling?"  "What are they capable of?"  These are very hard questions to ask yourself, because you don't know the answers.  And sooner or later you have to make decisions, based on these questions.  What if you make the wrong decision?  What if you short-change your child and stunt their capablities?  Or, on the other hand, what if you push them too hard, and they fail?  And what do you consider failure?  That they don't meet the expectation that you set for them?  That is not fair to anyone.

As you can see, there is the side of Autism that the public can see, and there is the side they hopefully they never will.  To see my daughter at school, she is happy, friendly, outgoing, and engaging.  She has a very dynamic personality that draws people of all ages to her.  At home, she is all those things, but also more.  She gets frustrated easily, she obsesses over things on a nightmarish level.  She is very, very loud. She talks to her "pretend friends" constantly.  She plays the same music over and over again.  She can become hysterical in an instant for the smallest reason.  When she is upset, she talks so fast and so loud that no one can understand her.  The same dicotomy applies to her schooling.  You can see her as an excellent student, on the honor role and honor society, student council and track team.  But open up her folder and you won't be able to read a single thing she has written.  She tends to rush through her assignments, and has no sense of responsibility with her homework or school supplies.  She is intelligent, but also is below her grade level.  So what will happen if I push her harder? 

Katie will be starting a new school in the fall, but continuing on in the same program.  She will be rejoining friends and classmates, and a few of the staff will be the same.  I am confident that the program she is enrolled in will continue to benefit her, and educate her to the best of her ability.  But that doesn't mean I'm not up nights worrying about it.  That doesn't mean that the first day of the new school year won't give me an ulcer.  And that doesn't mean that I am now friends with the IEP.  Sometimes, our Adventures in Autism lead us down a path that we cannot see the end of, that may seem never ending.  And an IEP is always an adventure!