We begin a new school year in about three weeks. Of course, for Shelby, she has two weeks off after this week because she participates in an extended school year which helps her from regressing in academics and speech therapy.
Perhaps you have seen the letter circulating on facebook or twitter written by the autism organizations whose name will not be spoken soliciting funds and the mother of a man with autism’s response to it. It is another case where friends who have little to no experience with autism have said, “is this the image of individuals with autism this organization hopes to create?” And where I say, that letter is not the kind of “awareness” that helps, although the mother’s response I give three hearty cheers to.
Autism is not a basket of roses. But I’ll say it again, neither is parenting “typical” children. Last year I had to deal with one-time behavioral issues with both Shelby and Joseph in school. Both times they were dealt with appropriately by the school in proportion to each child’s abilities and understanding and both times I was a wreck about my parenting and what my kids were learning from where. But I was more disturbed by Joseph’s issue than Shelby’s. Maybe that’s not fair on the face of it, but in holding each child individually to what they know and have learned and can understand, it was totally fair.
This house, this family, is not, and never has been, about “curing” or “fixing” or “healing” autism, sensory processing disorder or any of it. We are about embracing each individual and celebrating his or her strengths while encouraging through his or her struggles. To adopt an attitude of “cure” is to define Shelby in terms of a neurology she does not have. To curse the neurology she does have is to belittle her very existence and assault her personhood. It is to define her as, and only as, less than. It is to ignore the unique and beautiful gifts God gave to her and not the rest of us. It’s like that quote everyone uses about teaching a fish to climb a tree that is sometimes attributed to Albert Einstein.
Here we recognize autism not as a disease, a brokenness or a disorder. We acknowledge it is a neurology. So we cannot yell “F-U Autism!” Either when Shelby has a frustrating behavior or day nor when she successfully navigates some kind of social situation that was previously difficult for her. And if you want to read a genius post about why hating autism and blaming it for every ail or bad, you really need to check out Jess at Diary of a Mom’s post from May. It starts with this insight:
omeone very close to me is fighting ovarian cancer. It’s awful. No one should ever have to live through the hell that she has lived through this last year. We’ve thrown our hands up to the sky and yelled ourselves hoarse in anger. She shouldn’t have to suffer. She shouldn’t have to fight for her life.
If she were male, she wouldn’t have ovarian cancer. Cause, ya know, she wouldn’t have ovaries. As angry as I’ve ever gotten, I haven’t ever once said or thought, “F@%k femaleness.”
I mean, that sounds really odd, right?
“Screw your gender because you have cancer.”
As a woman, I am far more likely than my husband to get a urinary tract infection or osteoarthritis, or to fight anxiety and depression.
I’ve had urinary tract infections, and man, they suck. And I do, in fact, suffer from anxiety. I carry it like a toxic gas, trying desperately to keep it contained until the days when it escapes, and when it’s at its worst and I’m fighting with everything that I have not to choke in the cloud. I get angry in those moments. At anxiety, at myself, at my impotence in the face of something that I cannot control.
But I never think, “I hate my femaleness.”
I just … don’t.
Read and ponder it before you click over.
But what does this have to do with school? Well, education and methodology are two areas where we can clearly see, for Shelby, how many various approaches there are with an autistic neurology. One thing that is controversial is the concept of “inclusion.” While certainly there is a need for it still just how inclusion is gone about for one with an autistic neurology is not always as cut and dry as it sounds.
Children with special needs of all kinds served in public schools with an IEP (individualized education plan) are required to be in the “least restrictive environment” (LRE). This is to ensure they are getting the same quality education as their typical peers. The LRE goal is always complete mainstreaming with minimal, if any interventions or supports. Legally the most restrictive environment is a self-contained classroom or itinerant teaching (a child learning at home under the supervision of teachers and therapists that travel to him or her–this is usually reserved for only extreme cases such as medical fragility preventing a child from being in a classroom or severe behavioral issues etc). Realistically, the most restrictive is a child in a mainstream classroom with a one-to-one aid as often the teacher will defer to the aid in almost everything. That last situation doesn’t have to be most restrictive but it very often can be depending upon the teacher.
At each of Shelby’s IEP meetings, when it is determined that she will be in a self-contained classroom with peers with autism for the majority of each school day, justification must be given in the documentation. It is documented that behaviors related to autism would cause a disruption to her learning and the learning of her peers in a mainstream classroom and that she benefits more from teachers and teacher assistants trained to work with children with autism and in a smaller environment. This is not upsetting to me in the least. In fact, I’ll be the first one to tell you I WANT this for her. I know very little would be learned in a typical classroom environment by anyone with Shelby present at this point in time. But, Shelby does spend time with her typically developing peers daily. She attends “resource” classes (music, art, PE, technology, and library) with them with an assistant from the exceptional children department. She also goes on grade level field trips, goes to recess and walks to lunch with them (she brings her lunch back to the classroom). In fact, lunch is a new thing. Unfortunately, most of her class cannot handle the noise and chaos of the cafeteria and so Shelby is one of the designated children from her classroom who goes and gets the trays and brings them back to class. This is a new job she took on just last year.
The idea of LRE is to promote “inclusion” making individuals with autism interact with typically developing peers so that they can learn from their peers and their peers can learn from them. It is highly advocated for children with autism to spend as much time “inclusively” as possible. And this is where I have issues with the whole idea of inclusion.
It takes a huge amount of control, concentration and perseverance for Shelby to interact with typical peers. And she’s not always successful. The interactions exhaust her. Trying to conform to social situations she doesn’t understand and think in ways she doesn’t naturally think can be very stressful. Making her do that all the time? Out of the question. At this age and stage in her life, it is a recipe for disaster of epic proportions. Forcing it onto her, can be very counter-productive. Thankfully, her teachers are very receptive to this and so, for example, on days when there is a substitute in the classroom, either teacher or assistant, she doesn’t go to resource classes. Introducing a new person to that change in routine is almost never a good thing in their classroom. Rather than put that on the substitute or the child, they set up favorite or “preferred” activities for the children during their resource times in the classroom.
Keeping my child in her self-contained classroom most of the day sounds like a huge step backwards to many in the disability community and many parents who fought hard for inclusion and least restrictive environment. As I’ve explained, for Shelby, respecting her neurology means more limited definitions of inclusion. And we’re not alone in realizing inclusion looks different for Shelby. Adult autistic writer Judy Endow discusses the difficulty of inclusion as well. She concludes her post this way:
I believe we may come to discover in the future that to thrive and to be all that we can be, we autistics will need both the breadth of NT inclusion and the depth of autistic inclusion – two distinct and equally important styles of inclusion. As autistics, we also need to be empowered to choose how this mix best works for us in our given autistic bodies. My needs wax and wane over time, but it remains constant that to love and to be loved I need access to both inclusive environments and to be able to choose the mix that serves me best. This allows me to belong and to participate fully in the human race.
I read that post this morning and literally fist-pumped a huge, “YES! THIS!” because what she describes about inclusion is exactly how it applies to Shelby. She enjoys her limited time with typical children, but she doesn’t yearn for it. And there are times it is definitely too much for her. And at those times, she does yearn for “friends” in the autism classroom. When we respect her neurology, when we respect the entirety of who she is and what she needs, we realize it’s not a difficult decision. She does what she can but we don’t have any disappointment when she is no longer able to tolerate what we consider “normal.” Because she’s not a dryer-setting, she’s a human being. A very special human being. One who cannot be discarded or forced to be anything less than who she is.
If we adopt the attitude in this house that our child is diseased because her neurology is different, we succumb to the world’s view of her disposability. We denigrate her right to existence. But when we embrace her entirely, we show the world that every part of her, the entirety of her is valuable. She is a child of God, created PERFECTLY, as she is, in His image.