Monday, October 1, 2012

Inclusion Woes- questions about Autism and Mainstreaming

Go ahead...ask me a question. Any question. Well...almost any question about autism. And don't feel like you need to whisper it, or approach me with kid gloves. I am an open book when it comes to autism. I am more than happy to give you an answer to the best of my ability. 

Today, Autism with a side of fries wrote a GREAT post- Schooling them, Autism style yo!. A conversation with "Cousin D" that started with "WHAT DO YOU SAY TO A PARENT WITH A KID WITH AUTISM?"     What a GREAT QUESTION!  and she went on to give some great things on what NOT to say, as well as what TO say. Go check out the blog already!

I am all about "There are no stupid questions" I mean- that is pretty broad- sure there are some stupid questions out there- I have asked a few myself. But I really try to adhere to the the no stupid questions rule when someone actually has the guts to ask me about autism. 

Recently, I was bitching on my FB page about Inclusion and Mainstreaming and how I felt like The Boy was getting shafted at school.  I had posted:

"From October 29, 2010: Can't believe how awesome it is to see Noah in a "regular" class! Changes to his IEP- he is spending 100% of his time in the third grade class! This is what we have been working toward! We miss Ms. Bennett, Ms. Kelly and Ms. Donna - but this is what they have been getting him ready for- my heart is happy ♥
This was just 2 years he is spending at least half of his day in special ed. What happened?"

One of the fans of the page asked:  "Why do parents feel the need to fight so hard for inclusion of their special needs kids?"

In an instant, my hackles were up and my fingers were poised over the keyboard ready to type a scathing response. But I stopped myself, and read the question again. This was not posed in an insulting or rude way. This person really wanted to try and understand why I was mad and 
posting about this. Why was it so important to me?

As parents of a special needs child our job seems to be to  continually remind people that he is special, yet needs to live a life just as any child does... without prejudice. Teaching TOLERANCE is the reason for wanting our child to be included. It's a fine line we walk- wanting to make sure people know he has Autism, a special need but wanting him to be treated virtually the same. It's exhausting work- and I have it EASY in comparison to many, many parents. Children with physical disabilities, children with severe cognitive or developmental disabilities- services can be just as hard to obtain for them as well.

One of the comments came from Kristin Kunie:  "I have a 15 year old son with severe Cerebral Palsy... Hes basically a newborn in a 100 lb body. He needs to be taken care of by someone while in school and be in a special needs class. But... It's good for him to be around other kids... He likes being around other kids. He likes to watch them run around and play. He can't do the things that they can and never will. And it's also good for the other kids to be around kids like him. So they know that everyone is different. Hes in a wheelchair and a lot of kids don't see that. Then when they do, they don't understand."

Sarah Hansford  commented: "We would love a school for our autistic son away from mainstream so he can get an education in a stress free environment. He does not have an intellectual disability so he is not eligible for the local special schools. Yet he will struggle in mainstream. He needs to practice social skills at his own pace, not be thrown in the deep end. So there's my dilemma. I'm all for inclusion in mainstream WITH THE RIGHT HELP!!! unfortunately usually this doesn't happen and end result is homeschool." 

What about IDEA?  (Individuals with Disabilities Education Act) What about FAPE? ( free appropriate public education). These things of course are brought up time and time again. Ask any parent who has to have an IEP about the mountains of paperwork they have to sign saying they have been advised of both of these things.  These are the things that parents fight for. These are the things that parents have been advised their children are guaranteed but don't always receive them.  

And yes- A program the school considers “good”may not be adequate for every child, depending on the child’s needs. The bottom line is the child has a right to a free appropriate public education. If they do not learn and make progress in the district’s program, the district did not provide them with FAPE.  But doesn't FAPE extend beyond academic learning? Social skills are vitally important for any child's development and most especially those with special needs. They have to transition into the world someday. Yes, some may never be able to live and function on their own- but some WILL! Inclusion is so very important for these reasons and more.  Yes- there are children who are not able to be in an inclusive setting. Inclusion will not work for them, and may actually be more harmful than helpful. I recognize that, and I also know that MY son does not fall into that category. 

Of course schools are scrambling for money. Of course teachers are not being trained in how to teach kids on the spectrum especially in an inclusive classroom.  Which is a travesty- with numbers at 1 in 80 kids on the spectrum the real issue is WHY AREN'T THEY BEING TRAINED?? No Child Left Behind has pretty much made all teachers responsible for one thing- TEST SCORES. And I am sorry, but identifying academic achievement as the only aim of schooling detracts from the importance of personal, moral and social development.
When inclusion is implemented correctly, it can help a child with autism improve social skills and learn to navigate the neurotypical (NT) world. Unfortunately,  children with autism are placed in a typical classroom with little to no support which can lead to a failure of the inclusion experience.  Or like The Boy- they are stuck in a soecial education class where the biggest part of their "inclusion" is attending "specials" with the general education students. Many children with high functioning autism or Aspergers, who are successfully included academic classes, have no social supports. Many times schools only measure success by grades and place minimal importance on social skill development.
It really comes down to this.  Inclusion is belonging,being with everyone else, and feeling a part of what they're doing. It is acceptance, and knowing that you 'fit in'. You're no different than any of the others. You feel safe, secure, strong there. You can be yourself.  We all want to feel included right? Why should it be any different for our kids? WHY SHOULDN'T WE FIGHT FOR THIS BASIC HUMAN NEED??  

And why should we as parents  be branded as assholes and have people complain that it's not fair for their "normal" child to have a watered down education because of my kid on the spectrum? Oh yeah- I've heard that one. Kids on the spectrum CAN learn. Regardless on where on the spectrum they fall.  They just may learn a little differently. They may take an extra 5 minutes to process information.  They may need sensory breaks. They may need word processors because of handwriting issues. But THEY CAN LEARN!!   

So for all these reasons and more- THIS is why I fight for inclusion. This is why I advocate for my son. This is why I am finishing my degree in Special Ed with a focus on ASD's. I want to be able to help these kids, these families- to find their places, to belong, to be a part of everything. Because one day- these autistic kids are going to be autistic adults. And there is going to be a whole generation of adults foundering in the real world- all thanks to the education system and it's lack of successful, meaningful inclusion practices. THAT is a tragedy.

This website is wonderful. So many great resources!