In this article, I look at online groups that special ed parents form to help each with the crazy, complicated world of special education.
When Stasi Webber decided it was time to uproot her family from their Michigan home to find a better school for her 11-year-old son with autism, she turned to the internet for answers.
The public schools in her state don’t provide the specialized behavioral and life skills training, known as ABA therapy, that her son needs; he skips school every Tuesday and Thursday to receive these essential services. But recently, Webber learned from parents on social media that her son could get both academics and ABA training in schools in New Jersey, where she grew up.
With a tentative plan of returning to her childhood home in Mahwah, she found three or four local social media sites run by special education parents and asked about ABA services at the local district, its willingness to send students to specialized schools and comparisons with nearby towns. She put her house on the market.
“I knew I had to reach out to the internet, because moms are willing to help other moms,” Webber said. “You find out the most information that way.”
On Monday, Ian sat in a reclining chair in the Oral Surgeon’s office and stared at a five foot x-ray of his teeth. Dr. Song, the jolliest oral surgeon in three counties, pointed to Ian’s wisdom teeth under the gum line, which in their infinite wisdom, were pointing sideways, instead of up and down like any self respecting tooth should do.
“Those teeth have to come out now. Like today. Like right now. Like I would do it this minute if I could,” said the jolly doctor.
So, when we got a call on Tuesday afternoon from the office saying that Dr. Song had a sudden opening in his schedule at 11:30 the next day, Steve and I went into emergency mode. We cleared work schedules. A teenage computer programming class at the community college came to abrupt end. We filled out massive amounts of insurance paperwork.
And then the worry kicked in. How was Ian going to handle sharp needles and pain? Was he going to sit in the chair and be appropriate? Or would the Flight or Fight instinct kick in? And then who knows what could happen. He processes fear and pain differently than other kids, so there was a huge random factor surrounding this operation.
That morning, I distracted myself with a trip to the supermarket for supplies – pudding, jello, a chicken to make some homemade broth. We sent Ian to his computer class for an hour. And then we drove the old Subaru to the doctor’s office.
Ian panicked for a moment when he got a look at the IV needle, but he stayed still, so the doctor got it in his arm. And then Ian’s lights went out. His eyes fluttered down.
Watching your kid go under anesthesia for a routine operation, like wisdom teeth or tonsils, is so unexpectingly upsetting. We haven’t had to do it often, thank God. Watching your kid slowly lose consciousness makes one think of death. It’s a blow to the stomach.
I said, “Oh, I’m going to cry.”
“Don’t do that! I’m a social crier. I’ll cry, too, and won’t be able to do the operation!” said Dr. Song. And the staff kicked us out of the room.
In about 30 minutes, they came to the waiting room and told us it was done. Steve and I dropped our books and ran in. Ian was dazed and stuffed with cotton.
The nurse started giving us directions for caring for him for the next few days. She must give this drill about ten times a day, so she droned through the rules.
“No straws. No toothbrushes. Put gauze on the cut for 24 hours. Don’t eat crunchy or chunky foods for a few days. Just smooth stuff like Jello and pancakes and scrambled eggs —
Ian piped in “and hot dogs and sauerkraut….”
“No you can’t do that!”
“… and sushi and sashimi… “
“Listen, I have to give the rest of the directions!”
“…and pizza and burgers…”
I couldn’t stop laughing. Steve gave me a dirty look, because the nurse was giving us some very important about medications and dosages, but I couldn’t stop listening to my boy. Then on the way home, he was asking trippy questions, like “Mom, why do you have three eyes?” “Are operations time machines? How come it’s 12:30 now?” “What’s that rubber thing in my mouth?” [It was his bottom lip.]
And we’re so very grateful that our boy not only made it through an operation smoothly and is free from sideways wisdom teeth, but that he’s making me laugh and beam with pride every day.
Midway through American Airlines Flight 101 from Heathrow to JFK, shortly after our microwaved meatball dinners were tossed out like frisbees, the flight attendant asked my son Ian if he wanted another beverage. He intently played his Tetris game on the backseat video console without replying or glancing her way.
Missing most of that exchange, I looked over in time to hear the flight attendant loudly exclaim, “Well, how RUDE is that?” She glared at me.
I recited the textbook response I give whenever Ian does something that inadvertently annoys strangers: “My son has autism, so we try to be understanding.”
Almost 30 years ago, I walked into my class of 12 teenagers with acute disabilities in a District 75 school in the South Bronx feeling young and nervous. I had no formal training as a special education teacher, just a master’s degree in political theory and an emergency teaching certificate from New York City.
My students included Jason and Jorge, both of whom had learning disabilities and degenerative neurological disorders. They have likely passed away by now. Vanessa was a sassy 18-year-old with Down syndrome. Nearly blind and in a wheelchair, Robert loved to show off his autistic splinter skill of calculating which day of the week your birthday would fall on in five or 10 years. Sharonne, who wore a helmet, was so rattled by daily grand mal seizures that she was never able to remember my name.
My class was the highest functioning in the school.
On top of severe neurological, cognitive, and physical disabilities, my students also had all the challenges that go along with living in a high-poverty urban community. Every Monday morning, we fed children bowls of cereal we brought from home because many didn’t get enough food over the weekend. Classroom books and supplies were decades-old hand-me-downs from the previous teacher. Sometimes Jorge, who was in a wheelchair, couldn’t come to school because drug dealers had knocked out the elevators in his high-rise public housing building.
I first wrote this blog post back in October 2013. Due to the mysterious magic of google searches, it is my most popular blog post. I thought I would update it this morning, five years later.
My son has high functioning autism or Level 1 autism or whatever they’re calling it these days. Because researchers now think that there are many different kinds of autism, my kid’s variety is characterized by speech and social deficits, average to superior IQ, hyperlexia, some anxiety and sensory issues, no obsessions, no stimming.
He’s only a sophomore in small public high school right now. His story isn’t over yet. He still has two more years before graduation, and we face major decisions about his future. Sill, in those five years, he has made so much progress. He’s now completely out of special ed for math, and he participates in after school activities with the typical kids. Even in the past year, he has made stunning changes. We’re now considering future plans for him that were inconceivable when I first wrote this blog post.
Because this blog post brings in so many random parents desperate for answers, I thought I would spend the next thirty minutes writing up what worked for us. Now, I’m not a hundred percent sure that our methods for dealing with my kid’s autism are responsible for these changes. Maybe simple brain maturity would have gotten us to the same point. Maybe these methods only work for my particular kid. I can’t be certain, but just the same, I’ll share.
With my special ed kid in high school, I started attending evening lectures and seminars about what to do when he turns 18. We’re not quite sure what supports that Ian will need as he gets older, so I am preparing for the worst case situation and the best case situation.
The worst case scenario is that he can never manage the real world on his own and will need full support for everything from work to food to housing. The best case scenario is that he can use his computer skills to find a proper job where they won’t mind his oddities, and he can live independently enough that he will only need light oversight from a family member.
Last week, I went to one talk where a social worker for the county gave us an overview of all the tasks that a special ed parent must do before the child turns 18, and then how they would have to manage the health, food, housing, transportation, employment, and social needs for their child. I knew some of those things already, but this was the first time that I got the broad overview.
It was horrific.
Until your child is 21, the school district is largely in charge of people with special needs. Not only do they have to provide the child with an education, but they also provide counseling, physical therapy, social groups, and transportation. They don’t necessarily provide health care, but in the special ed school that I taught at it in the Bronx many years ago, they wheeled in kids in wheelchairs who were semi-comatose and supervised them for the day. By law, they must care for all children until they turn 21.
Special ed parents talk about what happens when their child turns 21 as “falling off the cliff.” Services stop.
The woman from the county explained that parents had to manage all those aspects of their child’s life on their own. Yes, there were different bureaucracies with different pots of money that could help you, but the money was small and each bureaucracy had its own paperwork and quirks. It became very clear at this presentation that some parents, specifically the mothers, now had a full time job managing their child’s life.
It is a full time job just filling out the paperwork. And the quality of services is terrible. Yes, they’ll give your kid a lift to his job at the supermarket pushing shopping carts for less than minimum wage, but it takes 45 minutes for the van to arrive. At some point, the state will provide your child with housing, but there is a ten year waiting list for an apartment.
The woman explained that parents had to spend $5,000 on a lawyer to create a special needs trust and to get guardianship over the child-adult, which is necessary to pay their bills and to make medical decisions. She briefly mentioned that the difference between getting power of attorney versus the guardianship option, but told us to consult with a lawyer about these matters.
At one point during the talk, my face got all red as I realized the scope of work ahead of me, if we face the worst case scenario. I think I burst out with “THIS IS INSANE!” in the middle of her presentation.
How can anybody with a family with special needs ever vote for a Republican? I can’t understand how anybody would vote against their family’s needs in this way. We have no safety net in this country.
If some cells divide incorrectly in utero, you have spend the rest of your life out of the workforce, and instead your days become about managing paperwork just to get your child-adult out of the basement. A couple of wonky cell divisions means a substantially poorer family income and a lifetime of working your way through phone trees to find the right dispirited bureaucrat who will okay your transportation voucher.
If I knew all this twenty years ago, I might not have decided to be a parent. I probably would have anyway, because my kids bring me so much joy, but if I knew all this, I would have certainly paused and reflected on the risks.
Last night, on the way back from a Mother’s Day celebration at my brother’s house, we had to have a serious talk with Ian about the “Five Deadly Words” — ugly, stupid/dumb, old, smelly, and fat. He can’t address people (or their dogs) with those words. He wanted to know if they were curse words. We told him that these words were as hurtful as curses, and he should never use them.
Social rules have to be concretely explained to Ian. One we establish a rule, then he’s good to go, but he needs them to survive social situations. He doesn’t naturally know that you can’t say “Good-bye Old Woman” to someone when he doesn’t know her name. We explained to him that people love their dogs as much as their children, so those words apply to people’s pets as well.
Over the years, we’ve had to set this rule plus dozens more to help Ian navigate the outside world. I’m writing up these rules this week.
Have you had to directly instruct your children or your family members about social or conversational skills? Tell me about it.