OCTOBER 8, 2011 9:35AM

Autism Speaks, but No One is Listening in My World

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I don’t understand IEP’s. If you are blessed enough to not have a child on one, you might not know that it stands for Individualized Education Plan. Basically, it means that if your child has “special needs,” he or she will receive curriculum accommodations in school. This could be anything from getting more time on a test, to having directions read aloud, to simply sitting near the front of the room in order to see the board.

In our case, I asked for an IEP for my son, James, who had been diagnosed with Asperger’s Syndrome at age five. Asperger’s is on the “high end” of the autism spectrum, meaning that he is very verbal, highly intelligent, and unbelievably creative, but he also has severe anxiety and social problems. And no, he does not look or act much like “Max” from the hit sitcom, “Parenthood” on NBC, who supposedly has the syndrome.

The popularity of this show means that many people now feel comfortable asking me questions about autism. You would think that would be a good thing. But it’s not.

First of all, I hate the term “Aspie” which is how people commonly refer to children with Asperger’s Syndrome. Come on now, would you refer to a woman with breast cancer as a “breastie?” A person with lupus as “Lupie?” The nickname diminishes the severity and agony of this condition. My son jumped out of my car when I was driving, a week ago because he couldn’t take the sound of his sister’s crying. (He was fine. Me – not so much.) He once ran out of a school play into a busy street because he was scared to go onstage. (I caught him right before he ran into the intersection. We went home. The show did go on.) He threatened to kill me once because I made him use toothpaste, and he frequently tells me that he will “get me back someday” because I make him clean his room.

         Of course, the teachers see none of this. They think he is a very smart, respectful, if a bit odd, little boy with an over-protective mother. They have rarely seen him “act up” in school, and they think all my requests for accommodations are, (let’s see, how did the principal say it?) “premature.”

One occupational therapist explained the difference in my son’s behavior at school and home this way: “It’s as if he is a balloon, and all day long, anxiety just keeps filling him up more and more, and when he gets home, where he feels safe, he explodes,” she said.

         While on one hand, it makes me feel good that he feels safe with me, I have to confess, I don’t always feel safe with him. I don’t feel “good” about the way he yells at me, slams doors, throws temper tantrums that can last for two hours, hits me…I actually have trouble writing down this list. I imagine an audience of mothers, shaking their heads, thinking that I should use “Tough Love” on him, (I have) that I should be stricter, (I try) or that I should medicate him (I have), use brushing therapy (I have), I should never give him milk again, (didn’t see any difference), or I should be writing my senator about the possible link between autism and mandatory vaccines. (I will, I promise.)

         There are many, many should’s in the life of a special needs mom, and there are very, very few things that work.

         What it comes down to is this: if ANYONE else treated me the way my son does, I would leave. I would. If a boss yelled at me the way he has, I would go to Personnel and have him fired. If a neighbor threatened me as James has, I would get a restraining order. If my husband hit me, I’d divorce him. But this is my son. This is my boy. I would do anything for him. And that means I take whatever he dishes out. I don’t like it, but I take it, and I try to manage it, and prevent it, and deal with it. And one way I’m trying to deal with it is by asking “professionals” for help.

So my husband and I show up at his private school, and we ask for an IEP. The school principal tells us that the process starts with an observation period, lasting for about four to six weeks. During this time, he will be observed by all of his teachers, the school psychologist, occupational therapist, principal, and two intervention specialists. Meanwhile, my husband and I fill out countless forms, submit doctor’s records, and read reams of paperwork.

Finally we all met in a cold trailer outside the school in November, to go over their recommendation. I knew before they said a word that they were going to deny our request. I could see it on their faces. A pitying, wondering, arrogant air filled that space, ironically decorated with posters in primary colors, declaring, “Respect Your Neighbor.”

The Team hadn’t “seen” anything wrong, the principal reported. In fact, he wasn’t as “bad” as some of the other kids in his class. The occupational therapist who had been asked to come in and observe him, actually had spent more time watching another child in the classroom and initiated an IEP meeting for him instead of for my son. They all laugh, if a bit self-consciously. I begin to cry.

         “He’s simply not demonstrating anything in school that you’re seeing at home,” the principal says, passing me a tissue.

         “But,” I sputter, “what I see at home is CAUSED by what happens at school. He’s on medication…” I stammer. “You’re not going to see it.”

         “Well, perhaps if you took him off the medication and we could see what he’s like…”

         “Really?!” I want to scream. “Would you ask a child with leukemia to GO OFF their medicine for awhile so you could see how bad it could get? What symptoms aren’t enough for you? You haven’t noticed the weight gain from the medicine? You haven’t noticed his greasy hair because he hates to use shampoo? You haven’t smelled him because he tries to hold it (sometimes unsuccessfully) until he gets home? You haven’t noticed that he never gets invited to birthday parties or sleepovers? You haven’t seen him give away his cookies at lunch to bribe his one friend to still be nice to him? You haven’t noticed that he was late 14 times this quarter because I won’t let him out of the house without brushing his teeth?”

         Well, they can’t help but notice me losing it here. Crying, drowning in my life…

         All we asked for were two accommodations:  The first was to assign him only one half hour of homework a night. (And that’s optimistic. I honestly don’t know how we’re going to make him get that much done.) Secondly -  let him do his homework on a computer. He says that cursive writing hurts his hand. That’s it. Two accommodations. And they are turning us down.

         “Have we seen a diagnosis?” one teacher asks. “I mean, I see the notes and medications, but do you have the definitive diagnosis?”

I am literally at a loss for words. “What?!” I want to scream. “Do you think I have Munchausen Syndrome? You think I am making this up? The doctor put him on four different medicines for no reason?!”

         “OK,” I finally say to her. My voice is shaking. “I imagine I can find that original diagnosis from five years ago. It is filed in a huge folder I have with all the insurance forms: all the claims to be filed, all the claims that we are currently fighting, and all the claims that have been denied. It’s in there along with the Autism Scholarship form that was also denied because we make too much money. Oh, and it’s with the list of resources that some kind doctor gave us that is so old that not one social worker on the form is still employed at the agencies, but yes, I imagine I can find it, if that is what you need in order to help me.”

         My husband lays his hand on my arm, but I cannot tell if it is to soothe me or to warn me to settle down.

         I can’t stay there anymore. I cannot stay in that room for one second longer. I get up.

         “The Team” looks shocked. Finally, I have their attention.

“But, but, you have to sign this!” the principal says. The form reports their findings and confirms the lack of need for any accommodations. I scrawl my name across it, wanting to write “Fuck you” instead.

         “I’m so sorry,” says the school counselor. “I know of a support group for Mothers of Aspies…”

“I’ll see if I can fit that in,” I murmur. “In between the doctor visits, the psychologist appointments, the psychiatrist appointments,” my voice is getting screechy, but I continue, “And the eye specialist, the occupational therapist, the trips to the drugstore, and while I’m looking for a new school for him…”

I gather up my things. My husband holds my coat. He looks proud of me. Thank God.

“Come, come now,” says the principal. “You don’t mean that.”

But I do. And we take him, the next day, to a public school. When we enroll, I ask for an IEP meeting. “Let’s wait a few weeks,” the principal says, “and let us see if he really needs one…”

        

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Comments

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Wow Well written and powerful. I can't begin to imagine how you feel and how you cope. Help is out there. Probably where you least expect it. Keep trying. "The system" is at fault, not you or your son.
Unbelievable. I know IEPs make extra work for teachers and that people try to scam the system. But this is unfeeling. I hope the five weeks have passed and you're getting some help.
You have done an amazing job capturing the fear, the frustration, the powerlessness, and the rage of families trapped in out-of-date, painfully slow or just plain backwards systems. You have also reminded me that I am not alone. Thanks for that. Your son has a champion in you; don't give up the fight for his life! Bless.
Well done! It is both comforting and infuriating to read stories so much like our own experiences. Good luck to you and give 'em hell!
Keep at them, the accommodations you are asking for are NOT unreasonable and are very simple to implement! I am an paraeducator in a class for students with special needs at a public school, we have student's with Asperger's and if the parent request were as simple as yours we would implement them ASAP. You're doing the right thing.
I admire your restraint. I would have gone for the "fuck you." I wish you didn't have to fight this fight all the time, but you're doing a hell of a job.
A very well-written, powerful story. We all understand rules, but it simply drives me crazy when people can't or refuse to apply common sense.
I feel your pain! My seven year old was diagnosed one year ago. He doesn't even let us use the word "Asperger." He says it's offensive because of the ASS part. We went through a similar defeating IEP process, and also removed him from the school. He went to Montessori for the remainder of the year and it was as perfect as I could imagine. Unfortunately, the magic didn't last forever. I'm homeschooling now because they had an influx of "annoying little brats with bad breath" and he spent much of his time hiding in a cubby with his sweatshirt over his head. Here's to what's best for the little guys, keep up the good work.
I know I am a little late to try and leave a comment but I came across your blog by a google search I was doing on the same topic. My son too has high functioning Autism and the school district doesnt see it. Actually they kicked him out of his speech therapy he has been recieving for 2 yrs now. I feel my son has his outburst more at home then anywhere else not to mention his social skills need work as well. I admire your courage and I didn't have the guts at all to stand up to the special Ed dept in our county. Good for you and I hope everything will work out for you in the end. We are waiting for ABA therapy to do an evaluation on our son, maybe you can try that?