She'll Be a Good Worker
By Julie Obradovic
"She'll be a good worker," she said with a smile, not meaning to be insensitive in the slightest. I could tell she thought this was a good thing. "She'll be a really good worker."
She'll be a good worker?
My eyes fell to the table, the only place I could look, fixated on the phone in front of me. My husband had participated by phone. He had just hung up a minute before. Save me. Please save me. I sent telepathic thoughts through it to him. I've kept it together this long. I almost made it. Please, God. Not again. Not every year. Matt? Can you hear me? Save me.
He could not.
The typing on the lap top continued quietly, the shuffling of papers all around. I'm certain they were all still talking, although I could hear nothing.
She'll be a good worker?
Tears swelled in my eyes, my heart stuck in my throat. If I blinked, there would be no hiding it, so I didn't. I just stared at my phone, and then eventually pressed the weather app in the hopes it would distract me. For a moment it did. And then, a question.
"So I wanted to ask you something," the new speech therapist asked strangely. Instinctively, I knew what it was going to be. She was new to our case, new to me. This happens every time.
She thumbed through her case history and came upon the highlighted sentence. Pondering it, she looked at it, looked at me, and then looked back at it. I was right.
"It says here that Eve was evaluated in 2007," she paused now looking at me again, "and that they consider her 95% recovered from Autism?"
"Yes," I looked her dead in the eyes with a suggestion of "...and your point is?" I have gone from intense pain to intense pain-in-the-ass in ten seconds.
"I don't understand," she responded flatly.
"I don't understand what you don't understand," I carefully answered back. It was still hard to tell if she was being sincere or not. Knowing how defensive I was feeling, I chose to give her the benefit of the doubt.
"Well, explain to me what that means. Recover from Autism?" She was actually sincere.
"It's quite simple," I relaxed back in my chair. "There are two schools of thought when it comes to Autism." I used my hands to demonstrate where they were in terms of space. "One school says it is a genetic condition that you are born with and die with." I put that hand way over to the left. "But there's another that says it's a disorder, an illness in our case, that is not only treatable, but preventable and entirely reversible." I put that hand way over to the right. "All evidence points to the later, so we treated her, and she got better. Like when you break a leg. You put a cast on it, and you recover. It might never be the same. There might be a scar or permanent damage, but you recover. That's what it means."
She looked at me for a moment. I could tell she was still confused. The director jumped in.
"A lot of parents have the same experience," she nodded to let me know she had my back. "It makes a lot more sense that these kids are sick, but not everyone believes that. Everyone is different. I have one set of twins, for example, and the mom knows for sure that one twin was different in-utero. It just depends." She felt better knowing she'd given both sides a fair shake. I got irritated.
"Actually," I said not really caring who this offended, "it really doesn't. It's all the same. It's not sometimes genetic and sometimes not."
"Hmph," the speech teacher wasn't finished with me yet. "So like, what got better?"
"Well, you should have seen her from the beginning," the director cut me off. "I remember when we couldn't get her to do anything. Remember how tactile defensive she was?" She went into the details of long ago. We've been with this director since age three.
"Yep, that's pretty much it," I lied when she finished, just wanting to get out of there. An IEP should not be a one-stop-torture-shop, and yet, every year for me, it is. A trip down memory lane, teaching all of the new staff members about our painful past. Always worrying about who is going to bring that up. Always that one teacher who seriously must have her head in the sand to not know anything about this right now.
We said our collective good byes. I gathered the papers with way too much information about all of things my poor baby girl still struggles to do and made my way up the dark stairway to the main entrance. At the last minute, our meeting was moved to the basement conference room because the IEP prior was taking much longer than planned. The basement was a perfect symbol for the experience.
In the car, I immediately turned off the radio. Anytime I have to concentrate, or simply can't process one more thing, I make it as quiet as possible. It's like when you're lost. You just can't think about anything else, even a song. I guess you could say I was also lost right then.
I drove slowly the three blocks home. It's the same neighborhood we brought Eve home from the hospital. I remembered also driving slowly with her bundled in her car seat that day. I was so careful, ready to attack anyone who even remotely looked like a danger to my precious child. I wanted to plaster the car with something that said, "There's a new baby in here! Watch it!"
I remembered how beautiful she was that day, one of the most beautiful babies I had ever seen. I remembered her bedroom and outfits, all laid out and clean in her pretty nursery finished well ahead of time.
And I remembered all of the dreams I had for her as we welcomed her in our lives. Doctor? Lawyer? Teacher? Astronaut? Performer? Athlete? Model?
I didn't know what she would be, but I had no doubt, it would be anything she wanted. Between her father and I, she was destined for great things. This I knew for sure.
She'll be a good worker.
It echoed in my head and my heart heavily. This was her destiny ten years later?
She'll be a good worker.
It angered me the more I thought about it, and it concerned me greatly that those responsible for her education seemed to think this was a high enough expectation.
"Not if I have anything to say about it," I said convincingly to no one pulling in the driveway. "Not if I have anything to say about it." This is my nature. I don't ever wallow for too long. Three blocks was enough of that.
But then I realized, as I turned off the car and made my way into the house, there really was nothing to say, nothing to do. All I could do in that moment was feel.
I put down the papers, gently hung up my coat...and cried.
Julie Obradovic is a Contributing Editor to Age of Autism.
Stay strong Julie,just keep growing and learning with Eve.
Teach her new skills step by step,day by day. It is not the experts who define what autism is. You know her the best,as her mother,you are the expert Julie.
Posted by: oneVoice | November 04, 2011 at 01:42 PM
I remember the IEP meeting when she transitioned from preschool to school age. You know, then one where the school district decides she no longer needs services because now they're paying for it instead of the state.
In an effort to absolve themselves of any financial responsibility for my daughter, the head of the committee suggested I call the Office of Mental Retardation and Development Disabilities. When I questioned why I would do that (I held firm that her services were to come from the school district) she responded, "Oh, right. You're going to cure her."
I am still waiting for and working towards the day that she can be taken out of that silly computer system that generates meaningless IEPs, walk into that bitch's office while she's stuffing a sleeve of Oreos down her face and say, "SEE???? She no longer has Autism."
Posted by: Diane | November 02, 2011 at 10:20 PM
Maybe it's time to change school districts so that Eve can be looked at with fresh eyes.
Worked wonders for my son! We've ditched the IEP/therapy stuff, too. If she's 95% recovered, does she really need all that *expert* help? At a certain point, the therapy just eroded my son's confidence.
Remember, people SEE what they believe, they don't often believe what they SEE.
Posted by: Michelle | November 02, 2011 at 01:19 PM
Jerry, I LOVE that! Puts it all into perfect perspective. Amen!
Posted by: ConcernedMom | November 02, 2011 at 12:59 PM
The Ark was built by amateurs, the Titanic by experts......don't wait for the experts!
Posted by: Jerry Taylor | November 02, 2011 at 12:57 AM
There is no point whatsoever to putting limits on any person. People can and do change a lot- especially kids.
Posted by: Jen | November 01, 2011 at 11:30 PM
Beautiful and tragic. And so terribly true. Excellent rendering of your life and all our lives J!
Posted by: LJ Goes | November 01, 2011 at 09:51 PM
bensmyson - AMEN!
And great article Julie . . .
Posted by: Parent | November 01, 2011 at 04:46 PM
This post brought me back to 8 or 9 years ago, when we first pulled my son out of the public school setting after we were repeatedly told (and given all those pages you describe) of all the things he could not and would not ever be able to learn or do. We started an in-home therapy program and I still recall the feeling of absolute shock I felt when the therapist marched in and told us WHAT my son would learn - no ifs ands or buts - just a statement of fact: he will learn this, this and this. It was such a drastically different approach - one of pure optimism and high expectations - rather than the school district's prediction of inevitable failure.
Well I worked my ass off for for several years and nearly had a nervous breakdown, and my son did make progress (even though much of it was later lost due to seizures and other medical problems). But that attitude of high expectations and eternal optimism truly made him thrive, regardless of the measurable outcome. Kind of brings to mind this notecard I bought for myself way back when he was first diagnosed ten years ago: "It doesn't hurt to be optimistic. You can always cry later."
He's back in the system now, with their long list of "realistic" goals, but it's obvious to me that something has to change. Thanks, Julie, for a much needed wake up call.
Posted by: Donna L. | November 01, 2011 at 03:47 PM
"I have gone from intense pain to intense pain-in-the-ass in ten seconds." What a great sentence! It's interesting how we parents, too, learn to transition on a dime as situations require.
One hopes that all of our children's teachers are shooting for the moon, instead of the ceiling.
Posted by: nhokkanen | November 01, 2011 at 03:25 PM
Our children can have bright futures. It is up to us the parents to push forward on those potentials. We cannot leave this up to the "experts".
Posted by: Lisa @ TACA | November 01, 2011 at 01:18 PM
I remember bringing my daughter home with Down Syndrome and having people try to encourage me with visions of my daughter being able to dress herself and become a bagger at a grocery store. "oh they're so loving!" people would say, and I would get so mad. My daughter isn't here to make YOU feel good or to teach YOU something. She is here to live her own life and to make her own choices. I don't have a problem with her becoming a grocery store bagger if that makes her happy, but don't make that the ceiling for her.
Nowadays since she's been dually diagnosed with Autism, I long for her to be able to bag groceries, but I still aim for higher. I am not even sure where I am going with this, but I want her to have all of life's options available to her. I don't want to long for the day when she can become a grocery store bagger anymore.....I want to feel like it is possible to recover her. And she has made lots of improvements. However it is still a long road from now, and I'm hoping that Autism hasn't buried the possibilities deep within her.
Posted by: Julie Leonardo | November 01, 2011 at 12:34 PM
not long after aoa started i posted a comment about one of the original cases of autism, and julie's great article reminded me of how i felt: One of the saddest things I've come across is that Case 2, Frederick W., came from a family of distinguished professionals -- his father was a widely known plant pathologist. Yet Frederick spent many years in a state school and according to the officials there he was "in charge of the loudspeaker at the annual carnival." This is what passes for "coping" with autism. Frederick W. should have had the chance to go to college and follow in his family's footsteps. Instead he is doing a "good job" with the loudspeaker. This is not good enough. I don't want to read any more STORIES about kids and families coping. I want kids to recover, autism to end, and families not to have to cope at all. This is the purpose of Age of Autism.
Posted by: dan olmsted | November 01, 2011 at 11:31 AM
I feel the same way. How DARE they presume that's all they have to do, as long as your child will be "a good worker," their job is done. Not by a long shot, buddy.
Posted by: Sandra Carroll | November 01, 2011 at 11:29 AM
Julie, I don't think it's so much about someone else saying your daughter will be a 'good worker'. That's for your daughter to decide when she's older and because of you, she has choices. To be 95% recovered is incredible and no small feat. But, to really look at this, you educated someone there, sounds like both the director and the SLP. They have seen improvements and will remember them, which hopefully will help the next child that comes under their care, to realize that autism is not a fixed stagnant condition, and with work things improve and children recover. Every single person that, as parents, we convince that autism isn't fixed and hopeless is a victory.
Our child's school are amazed by his progress and are eager to learn from us. That kind of hands-on experience can only be gained from parents who refuse to accept defeat. One at a time we educate, one at a time children will recover...
Posted by: SarahS | November 01, 2011 at 11:10 AM
I'm assuming that had the word "happy" been inserted into the sentence the world would have lit up for you, as it would have for me.
"Your child will be happy."
But "worker"? If Ben wants to be a worker then fine, drive a train, milk cows, negotiate a contract for the next big thing, great, but if he's not happy then who cares... only someone that sees life as a means to earn income and measure the quality of one's life as to earnings would care if someone has the potential to be a good worker or not. Most importantly for many is if a person is valuable as a consumer, they work in order to have purchasing power, pay taxes.
Julie I know for a fact that your child will be happy, because she knows what it's like, you have given her that gift. Just like I know my son Ben will be happy, I know it, I know it, I know it!
Posted by: bensmyson | November 01, 2011 at 10:47 AM
Says it all, Julie.
There has to be a special place in Hell for every single one of these so-called 'professionals' who has participated in robbing our children of the lives and the futures they were meant to have.
Posted by: Donna L. | November 01, 2011 at 09:15 AM
Julie, you have accomplished something that is near impossible. You wrote about your nearly fully recovered daughter, yet perfectly expressed the pain of a parent who is still just as concerned about her child's future as parents of children who have not come as far in the recovery process. It is how I feel, too.
I am fighting with all my might every day for my children, and I dread their double header IEP meetings each year. Same day, back to back, every year. This year, it will be all new people at the table as my kids are in a new school, save for their OT, who truly "gets" them and has worked with them for a few years. Sometimes I think most professionals and teachers working with our children perceive them as less than human, no matter how far (or not) they have come in their recoveries. I perceive this devaluation of our "different" children, and it is painful to observe. I often wonder what stupid research "paper" they might have read that they are so closed minded in their approach to working with my children. Or, perhaps, they just believe in limitations, and have no open mindedness at all on the topic of improvement.
As we all know, there is no "closed window of opportunity" when it comes to the brain. Our children usually have long lives ahead of them. Recovery, no matter how slight, or how great it might be, is the goal. I wish all the professionals working with our children understood the healing capacity of the human brain, and human body. I wish they embraced the potential all of our children have, rather than accepted our kids' social deficits and physical challenges as the expected end result.
Keep believing, Julie. Please don't let the unhelpful non-professionals get you down. Your daughter's future depends upon what you and your husband believe, not what "they" believe. You will guide her to the career that is right for her. She will succeed, and will exceed their expectations for sure.
Posted by: Not an MD | November 01, 2011 at 08:01 AM