IEP's and Why being Autistic is more accepted at Monkey Joe's than the hospital

When I was preparing for my son Zac’s first IEP (Individualized Education Program) – I did what any Mom would do: I researched until my brain hurt.  I looked at the Commonwealth’s special education laws; I read through IDEA (Individuals with Disabilities Education Act); I researched IEPs on Special Education sites; I talked to others through online social networking sites; I read books.  I heard and read so many negative things about the Big Bad School vs. the helpless, meek Mom.  I read that I would need to come prepared to the IEP meeting, loaded down with documents and research and evaluations, and ready to fight for my child.  I told my husband, “We will not sign.  We will not decide anything today.  We will take this home and have it reviewed.”  I needed to repeat it over and over to make sure I was entering the IEP meeting as a Mama Bear, ready to protect my young.  This IEP meeting would determine my child’s education, his future, and my status as a Special Ed Mom.  All this for preschool.

Well – I couldn’t have been more wrong about how the IEP meeting went.  It was wonderful.  Everyone was warm and welcoming and asked questions about Zac.  I had written a letter about Zac in order to remind us all that he is an amazing, loving child – not just “moderately autistic”.  They loved the letter and I adored them all immediately.  We determined the conditions of the IEP and I was excited with what they hoped Zac to accomplish in his first year of preschool.  And yes, I signed the IEP.  It took everything I had not to add a huge smiley face after my signature.  I was so happy with how it went – I was talking a mile a minute in the car on the way home.  Tim teased me about signing at the meeting but really I don’t think it could have turned out better.

Lining up cars at Target

Our IEP for Zac’s second year of preschool went just as well (only with much less stress on my part).  My preparation this time was reviewing his previous IEP and baking a breakfast cake to bring in.  We had the meeting in Zac’s classroom so he and the boys could play.  It was so easy, I didn’t even think of it as an “IEP meeting”. 

Zac has had his ups and downs in preschool.  He is not verbal enough to tell me why he doesn’t want to go to school some days but he is a great speller and reader.  He is counting to almost 100 and saying things like “milk” and “banana” when he wants one.  This is huge!  He is dressing himself and loves playing with his brothers. 

And now we approach kindergarten.  The biggest question we have had to ask ourselves is whether to put him at his home school (where Kyle will be in 1^st grade) and attend regular kindergarten or to keep him in the Special Ed program at his current elementary school.  We have to decide how much change to give him and how hard to push him.  He is smart.  He can do the kindergarten work easily – but he does get anxious and he does regress with change.  So right now we have decided to keep him in the SCCIP program at his current school.  He has been in the same classroom with the same teachers for 2 years, so a new classroom and new teachers will be big change.  It should push him forward and that is what I love.  I know I will have to continue facing these decisions each year and there will come a time (hopefully sooner than later) when we will decide to “mainstream” Zac.  

And that is what brought me to write about this now – getting a phone call from Zac’s teacher to check out some kindergartens and an article I read in Parents Magazine “The Play’s the Thing” (Parents magazine, April 2012, page 106).  It’s about the Wolf Performing Arts Center, which is a non-profit theater program in Philadelphia.  What struck me most is what the program founder Bobbi Wolf says of their program, “Wolf PAC is not a theater program for children with disabilities.  We’re a theater program that includes children of all abilities.”  The article goes on to talk about “inclusion” rather than “mainstreaming”.  The hardest thing for me as a special needs parent is not isolating Zac because of his autism.  But we do it at his school.  And at this point I think that is what he needs.  I can’t see putting Zac in a class with 17 or 18 other 5-year-olds and all the drama that is inherent in kindergarten classrooms.  This is the year lots of kids start school if they didn’t attend preschool.  And they need to learn how to be in school for 6 or 7 hours.  They need to learn how to wait in line and eat in the cafeteria and raise their hand and then wait to be called on.  There is one teacher and one assistant teacher responsible for all those children and if Zac decides it’s too loud in the hallway or that he needs to use the bathroom – he could very well melt down and they would have a crisis on their hands.  I worry about his social skills and I don’t want it impacting the kindergarten work he will need to do. 

Hands on House in Lancaster, PA

Autism is hard because I don’t want it to be an excuse – but it does present a different set of problems and concerns.  When taking Zac to the doctors and hospital recently I kept saying “He has autism.”  Each doctor or nurse or X-ray tech said “That’s okay.”  I lamented on Facebook afterward because I wasn’t apologizing for Zac – I was explaining.  You don’t look at him and think he won’t answer your questions or will cringe from your touch.  So instead of an awkward exchange – I start to explain to them and they automatically say “That’s okay.”  I think I should have prepared a speech ahead of time because I never had a quick comeback until after leaving the hospital. 

Interestingly enough – the best people to deal with Zac have been teenagers.  Whether we are visiting Dutch Wonderland or bringing the kids to play at Monkey Joe’s or the Sportsplex, teenagers who work at these locations have always been awesome.  I don’t tend to automatically tell people Zac has autism but sometimes the situation presents itself if he is going to be touched or not responding to someone else’s directions.  Teenagers have always been helpful, smiling, understanding, and open to suggestions.  Sometimes they even give me helpful suggestions!  I wish I could let them know how great they are – and how they should never grow up because someday they might be saying “That’s okay” instead of just being awesome.

Zac at Dutch Wonderland

Are teenagers more accepting of disabilities in children because not long ago they were children themselves?  Being a teenager is hard so maybe they are more likely to remember that sometimes being a kid can be hard too.  What is it about being an adult that we suddenly have to be able to handle everything?