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.”
For a long time, I’ve complained about the toxic environment that our kids inhabit today. On Sunday, Kim Brooks in the Times wrote that schools need to change — longer lunches, recesses, less emphasis on tests — to make kids’ lives better.
But we need more than some simple fixes in the school day. WE need to change. Schools are democratic institutions; they reflect the will of the community. And the community wants their kids in the best college possible. So, that means squeezing in more desk time and padding the resume with lunch-time bogus clubs. In order for schools to change, we need to change. And even if schools change, that’s not enough.
I hesitate to talk about how Steve and I have parented our kids, because I don’t want to parent-shame anyone. And we’re not perfect. I love my cellphone way too much. So, let me talk about what we’ve tried to do, not always perfectly.
We have family dinners about five or six times per week. I cook a meal, we sit at a common table at the same time, we eat it, and we talk a bit.
It sounds really simple, but not many families can do that anymore. I haven’t considered job openings in NYC, because there’s no way that my family would have food on the table if both Steve and I walked in the door at 7:00.
Aside from the benefits for mental health, with 2 teenage boys, we would very quickly be broke if I didn’t cook dinner regularly. They seriously eat VAST quantities of food. Last night, I made a chicken stew with about 4 pounds of chicken, 12 carrots, 3 onions, 3 celery stalks, wine and chicken broth, herbs from the garden, 5 potatoes, loaf of bread. It cost about $20. If we step into a restaurant, even McDonald’s, it’s a $60 minimum. I hope to squeeze it into a second meal by putting the leftovers on rice tonight.
Dinner time is a good time to debrief everyone at the same time about their days. It’s a time when we can catch problems or put a bandaid on a mental boo-boo. It’s a transition time for Steve, who is still sometimes in work-mode when he walks in the door. But even with pressure cookers, it’s very hard for families to do what I do every day. That chicken stew meal took about 2-1/2 hours to prep and cook; very few people have that time today.
We do a family activity together every weekend. Sometimes we go on bike trips or hikes. Sometimes we visit extended family. We go to museums a lot. None of it costs a lot of money, but it’s hard to have the time to do those things if the kids are in lots of high pressure sporting activities and are working on school projects. Or if the parents are catching up on household chores on the weekend.
We live near extended family. Again, this was a sacrifice. I didn’t put myself on the national market for an academic job, because I wanted to live near family. It’s good for the kids. And it’s good for me. My mom is driving Ian to band camp today, so I can get in a full day in front of the computer.
I think we all know that these things (and more) are important for kids, but it’s hard to proscribe cures that are unworkable for most families. People need (and want) to work long hours. It’s also very hard to run in a different direction from other people in your community; if their kids are in all weekend sports programs, then your kid is going to want that, too.
In some ways, we’ve benefited from having a special needs kid and have always been on the outside of suburban life. Still, I think even with the limited time, families could step off the fast lane a little more. It’s actually super fun.
I didn’t buy too much when I was in the UK. All the stuff in the London shops, I could get in New York City, a mall, or online for the same price. Also, I didn’t feel like lugging around too much. I couldn’t resist some small knit items in Scotland and small items from stores that we don’t have here.
In Edinburgh, I bought some cutie-pie change purses and earrings at Simon Bonas for my nieces.
In Scotland, there are a ton of tourist shops with the full kilt silliness. That traditional man-purse is called a sporran, or as Ian called it, “a dick hider.” The nicest stuff in those shop was Harris Tweed and Aran sweaters, but a little bit goes a long way. The Aran sweaters scream Sister Mary’s Convent Gift Shop; beautiful stuff, but too chunky for me. I did get a pair of lovely driving mittens. The Harris Tweed is fabulous on a wallet.
But a little of bit plaid and tweed is lovely. I picked up some lovely scarves and wallets for Christmas gifts.
On the drive to Inverness, we stopped at the House of Bruar, a high-end store for Scottish Country Clothing. It was kind of awesome. Steve got my birthday present there.
We’re huge suckers for outdoorsy clothes and camping gear. We’re heading out to the woods next weekend, so we’ll give the tents and propane stove a workout.
Here on the east coast, summer is still in swing. We’re at the point, where we can see and smell Labor Day — that end post for fun — but we’re trying to squeeze out a couple more weeks of relaxation and ignore the guilt about work.
Summers used to stress me out enormously, when I tried to work while juggling an insane camp commute for Ian. There aren’t many camps for kids with high functioning autism, and when I found a good one, it was inevitably very far away. But now, I’ve rethought my summer work schedule. I’m working on personal essays, rather than reported articles. And Ian’s found his place at computer camp, so there’s less driving and less stress.
But I have tons of sympathy for parents who don’t have my flexible work life. Schools should be 12 months long.
Jonah just finished off his second summer class. (Taking summer classes is a growing trend among college students.) It was a super hard science class, so he studied about six days per week and commuted back and forth to his state college. He came home yesterday afternoon with a two-week beard. He’s going to sleep until noon.
I had Ian in some camp or another all summer — some boring (but free) stuff at the high school, 3 weeks of expensive (all day!) computer camp, and a half day class at the community college. The last two weeks of August are full day marching band camp. He likes being super busy, so I even squeezed in some tutoring hours around all that.
But this week is free. He played Minecraft, and we walked around the neighborhood capturing Pokemon. I took him and a couple of boys to the video game arcade. Then this afternoon, we’ll grab the bus into New York City to go to the museum and meet Steve for dinner. Hopefully, Jonah will wake up and join us.
At this point in the summer, we’re always like “holy crap, the summer is almost over, and we haven’t sucked out all the fun out of life yet. Better get to it!” So, we’re squeezing in a camping trip in upstate New York next weekend. We’ll have to build a fire in the backyard sometime. And get another day at the beach. And eat a hot dog in Central Park.
I do have a couple of deadlines at the end of the month — easy ones, but still deadlines. And there’s the perennial guilt that I should be doing more. But I’m ignoring all that today. Off to appreciate life.
I never expected to get much work done in August, but I hoped for slightly more productivity than has actually happened. Wisdom teeth took their toll. Also, Jonah’s comings and goings have wrecked my rhythms. Ah well, family first.
I’ve been reading best seller type books lately to counteract my tendency to overthink my writing and get too esoteric. Nobody wants to read anything from a college professor. So, I’ve been reading Nora Roberts books for the past week. I like her stuff, because she’s so prolific, and I haven’t read her stuff before before, which means lots of backlist. I could go through a trilogy a week and still have more to go. I read Year One yesterday, which was sort of like The Stand and The Road, but with witches.
I admit that I found that Facebook post, because I googled Nora Roberts and ghost writers. How does anybody really write four books per year without a ghost-writer? Well, Roberts explains in her Facebook post.
Roberts may not get help with her books, but other best selling writers do. One of the moms in town told me that her brother is a ghost writer for one of those big named authors. She said her brother has a big house in Connecticut with horses and writes for five hours a day. Would you do that?
Ian’s doesn’t have any camp this week. I’ve got some tutors and playdates scheduled for the next couple of days, when I’ll squeeze out some words, do some virtual meetings, and start some research. But then I’ll walk again from it and probably take him into the city to visit some museums later in the week. We still have several more weeks before schools start around here; until then, there is no routine.
I have to go over to the other blog, the one I only use for professional purposes. People have been leaving me both nice and awful comments over there. I suppose I should handle it. Sigh.
There are some people who read an article that they hate all the way through. Then they find the author and compose a note to the author just to tell them how much they hate what they wrote. Who does that? I should just ignore it, but I felt like someone walked into my house and pooped on my carpet. I can’t ignore it.
I’m feeling bummed out about journalism today. Pacific Standard (I’ve written for them) shut its doors. A freelancer for NPR was fired for a political tweet. So many people that I know are jumping ship. What happens when journalism dies?
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.