This week began with World Autism Awareness Day, created five years ago by the group Autism Speaks as a locus for fund-raising and spreading the word. It comes at the start to National Autism Awareness Month, which was created by Congress back in the 1970s. In commemoration of both, Huffpost Parents is looking at autism through the eyes of parents all this week. Each day we will run an essay about a next stage of parenting a child with autism, starting with the moment of diagnosis, and going through school years, and teens, and entry into the adult world.
I don't know how to do this.
There's no book for taking the next step. No Fiske Guide to Colleges. No Barron's. When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family.
There's no book for our autistic son Mickey, who is turning twenty. No U.S. News and World Report ranking best vocational opportunities; no handbook rating residential programs for developmentally disabled young adults. We're making it up as we go.
Graduation fever is spreading through Mickey's class. Parents and students are itching to leave the security - and the restriction -- of our public high school's self-contained life skills class. Most are opting to send their children to residential programs far away. I'm feeling coerced into making decisions I'm not ready to make; I roil with fear and uncertainty.
Petitioning the state for legal guardianship of our own child before he turned 18 was heartbreaking. Getting him Supplemental Security Income and entering the labyrinth of federal bureaucracy was nightmarish. But this step - preparing to leave high school, and the world of what the government promises every disabled child, a "free and appropriate public education," isn't just unnerving. It's terrifying.
Mickey too has caught the fever. He has been a twelfth grader for three years, and he is asking to leave. Loud and clear. "I'm not going back to high school next year. I don't want another yearbook. I'm graduating."
He has always loved his yearbooks, memorizing the name and face of every person in the building so that when he walks down the hall he can greet everyone by name. I have secretly ordered a yearbook for him. Just in case he changes his mind.
"Everyone is ready to go to college at a different time," my husband Marc and I tell him.
"I'm going to college!" he insists.
Does he even know what college means? He knows his brother and cousins have gone; he sees classmates leaving. He understands college is the step that comes after high school. "What do you think you do at college?" I ask him.
"I don't know."
"Do you go to class?" I persist.
"I. Don't. Know."
Does he think it consists of eating out, hanging with friends and watching televised sports in the student union, as we did when we visited Jonathan? Or perhaps he views it as extended sleep-away camp?
"Can we look at colleges this week, Dad?" he persists.
"Sure, Mick," Marc says. Later he tells me, "What do you think he's expecting to see?"
"I don't know that it's anything specific," I say. "I think this is his way of telling us he wants more freedom."
We say, "College." But it won't be. He's too cognitively challenged for that. "College" will be what we call whatever he does next.
Mickey is legally entitled to one more year. Parents of older children with disabilities advise us to keep him in school as long as we can. "Take whatever the public school system can still give you and hold them accountable," one advises us. Another warns us that once a child turns 21 and exits school, services for disabled adults are abysmal. "In school you're used to having people with master's degrees working with your kid," cautions another parent. "Once you leave school, you're getting people making $10 an hour."
"But they have high school degrees, right?" I ask.
She laughs ruefully. "If you're lucky."
Marc and I aren't ready to take off the training wheels yet. "Residential placement seems so permanent," Marc says. "Camp is one thing. Kids get really grubby there, but we always know we're going to pick him up and clean him up again. His voice cracks as he asks, "Would you pack a six year old off to boarding school?"
But Day Hab sounds like a dismal option. The programs are funded by Medicaid. I've heard parents describe it as "glorified babysitting." I think about the first special needs preschool class we ever visited. Seventeen years ago, and I can still see that impassive teacher who never left her chair or looked at us. How bored she'd looked. Is that what day hab offers? I picture a warehouse. Indifferent, untrained staff. Keep-busy activities. Coloring. Stringing beads. A room full of disabled adults, parked in front of a TV for hours.
Adolescence and the onset of epilepsy have made him emotionally labile. He can be belligerent when thwarted. Are these normal adolescent mood swings, or the harbinger of a seizure? We're never sure. Anger and irritability can occur hours or even days before one strikes, like the hissing whistle of a sky rocket before it explodes. We've learned how to manage him, knowing how quickly he can flare up and spin out to that angry place, and how difficult it is to reel him back. But the world isn't going to tiptoe around Mickey. It is he who must learn to control his temper.
To this end, we enlist the aid of the school psychologist. "Mickey is intelligent," he says. "He really has some insight into his behavior." It makes me teary. No one else at our public high school has ever said my child is intelligent.
Intelligent despite the terrible standardized test scores; despite profound language deficits that even now cause him to mix up his verb tenses or use scripted speech; despite three sedating anti-epileptic drugs that dull him down. We no longer question whether he is innately intelligent. We know he is. We hear it in the observations he makes, in the questions he asks, in the way he cuts to the emotional core of things. After the death of a great-aunt, he tells us, "I feel so sad. All our people are disappearing." When his class throws a party for him, he tells the teacher, "I feel loved."
And he is. Even when he isn't easy to be with, he is still lovable.
We have felt cushioned and cocooned by school the past sixteen years. We haven't always been happy - in fact we've been profoundly angry at times. But being in school has meant that we've known where he is every day, and that he is safe.
And that's the crux of our fears. We can't keep him safe anymore. We know our son needs to be stretched and challenged. But the world isn't safe. How will we protect him, when we are no longer there to absorb the blows?
Does Mickey realize that he will never be able to go out into the world unattended? Never ride a bus or train alone? He will never drive a car; epilepsy has seen to that. Living with seizures is like living with the threat of terrorism. You have to stay vigilant, because you could be struck anywhere, any time. A seizure leaves him so profoundly disoriented that he will walk into oncoming traffic. More than once I've cradled him in my arms after one of those episodes, only to have him ask me, "When are my parents coming to pick me up?"
Other parents look forward to their empty nests, to reconnecting as a couple. We have micromanaged every hour of Mickey's life for nearly 20 years. How do we ever shut off our dependency on his dependency?
Will we feel free? Or unmoored?
Then we get lucky. A space suddenly opens at an autism school half an hour from home that has a transition program. They will take him for his last year of formal schooling. They want him immediately. They will work on cooking. Laundry. Emailing. Office skills. Money management. Travel training. Our school district will bus him there. We describe it to Jonathan.
"Is this a marriage of convenience?" Jonathan asks.
"This is a good place," Marc assures him. "And it buys us breathing room."
We cross our collective fingers. Mickey glows when we tell him he has done so well at high school that he is graduating into a program that helps kids get ready for college. We make the switch.
After his first week in the new program, Mickey writes Marc an email.
Dear dadYesterday I went to gym and do volleyball. Then I went for a walk.
Then I worked on the computer. I feel great about my new classLove
Mickey
When a baby is born, someone cuts the umbilical cord for you. How can we possibly loosen the thousands of threads that bind him to us? It's an endless unraveling, this process of letting go.
But we must. And we will figure out what comes next. We will do this just as we have done everything else these past twenty years. Pulling together as a family.
Read more essays by parents of children with autism here.
Follow Liane Kupferberg Carter on Twitter: www.twitter.com/LianeCarter
Jenee Woodard: On a Pilgrimage With My Autistic Son
Tricia Regan: Super Soul Sunday: 'Autism: The Musical'
Thanks again for your story sorry I rambled but sometimes I just have to get it out, and no one close to me really understands.
http://www.youtube.com/user/hasenpfefferwho?feature=guide
I understand your frustration. Sometimes my son's seizures haven't shown up on the half-hour EEGs in the doctor's office either. Have they done an extended EEG (multi-day) in the hospital with video monitoring?
I know exactly what you're talking about. Doesn't matter how many studies have never found any causal link between vaccines and autism. In the absence of any real answers, people will believe what they choose to believe. And as you said, unfortunately some of the worst mother-bashing comes from other mothers.
But I sure don't want him at some group home, sitting in front of the TV all day, or some other equally mindless thing. And I worry about him even having a place to stay where he can be taken care of. A place where he is accepted entirely for who and what he is. A place where he doesn't always have to come into everybody else's world, but they come into his. He seems to like where he lives now, and he is well taken care of, but the funds from that could dry up any time.
I'm amazed at the amount of hostility that comes from working people who resent anything going to adult with disabilities. Like anyone would choose autism? "Well, you can't expect the govt. to take care of you." My son is unable to drive a car, balance a checkbook and I'm not sure he even knows what the concept of money is. But, I will work to make sure there is a place for him in the world in which to live his adult years.
I have spoken to parents with autistic children and have found that I have much to offer in the way of insight into how their children think, act, and react in various situations. I would like to help more, but I'm leery of organizations that claim to speak for people like me yet mostly consist of neurotypicals.
I was wondering if you had any suggestions on where I might go, and what I might do to help parents of autistic children, and the children themselves better understand and cope with their condition?
Thanks again.
Are you familiar with the website Thinking Person's Guide to Autism? They are featuring "Slice of Life" conversations with autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month. It's a great blog, and many parents read it. It might be a good forum for you, if you are comfortable writing about yourself. -- and not just in April. Anytime. There's a "submissions" tab at the top of the blog.
TPGA's goal is to help readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.
This is taken from their website:
"We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope."
Thank you for commenting, I really appreciate it.
http://thinkingautismguide.blogspot.com/
Here is where the story takes a turn for the worse. I aced the classes (well all but one), I aced the internships, but NOBODY is willing to give me a real chance to student teach. They believe autistics have no place teaching in the classroom, and aren't going to budge. The second chance they pretended to give me, I even passed every review (which are biased by the way, your ability to maintain friendships with your coworkers is graded 15 times, your ability to effectively teach, 3 times) with flying colors, only to be dismissed 5 weeks in. Now I sit here with my Master's in Special Education, but no certification, which means there is very little I can do with it. I need a little help, some services to help me get a decent placement where I can get a real chance, that just doesn't seem to exist here in Phoenix, and even if it did there is still the ASU problem.
Here is where the story takes a turn for the worse. I aced the classes (well all but one), I aced the internships, but NOBODY is willing to give me a real chance to student teach. They believe autistics have no place teaching in the classroom, and aren't going to budge. The second chance they pretended to give me, I even passed every review (which are biased by the way, your ability to maintain friendships with your coworkers is graded 15 times, your ability to effectively teach, 3 times) with flying colors, only to be dismissed 5 weeks in. Now I sit here with my Master's in Special Education, but no certification, which means there is very little I can do with it. I need a little help, some services to help me get a decent placement where I can get a real chance, that just doesn't seem to exist here in Phoenix, and even if it did there is still the ASU problem.
I see that you've mentioned SARRC...Have you tried contacting CARD or the Melmed center yet? You might even want to try contacting the Autism Society of Greater Phoenix at http://www.phxautism.org/ - They might have some advice too. People like you are really the BEST source of advice for OUR children as they transition from child to adult!