In the “Crazy, Complicated” World of Special Education, Parents Turn to One Another for Help — On the Internet

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.”

More here.

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The Wisdom of Teeth

Ian at the Tate. Photo Credit: Jonah

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.

Flying With Autism

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.”

More here.

What To Do With Kids With High Functioning Autism?

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. 

Ian at age 2, when he first started speech therapy.
Ian at age 2, when he first started speech therapy.

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. 

Continue reading

Boosting Social Skills in Autistic Kids With Drama

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How do you join a conversation at a middle-school lunch table? What do you say when someone says hi to you in the hallway and you don’t know her name? How do you delicately correct a member of your lab group in science without calling him stupid? Is it appropriate to tell your English teacher all about your deep and abiding interest in Pokémon characters?

A set of subtle and complicated social skills is embedded into the entire school experience, from the lunchroom to the classroom. While most children naturally learn how to take turns talking with their friends and stay on topic during classroom discussions, these skills do not come easily to kids on the autism spectrum. Social and communication deficits are one of the hallmarks of this condition.

More here.

Does My Child Have Autism? What Is Autism? Why Won’t My Kid Talk?

What is autism? 

Autism is three separate problems rolled into one. 

1. Autism is a Speech and Language Disorder. Autistic people do not understand language in the same way that other people do. (I will refer to nonautistic people as neurologically typical or NT's.) They do not learn to talk or comprehend speech in the natural, organic manner that NTs do. These problems manifest themselves in different ways. 

Some autistic people will learn to talk at an unusually early age. Their deficits come out later in life, when they have trouble comprehending other people's words. Conversations with a verbal autistic child may be one-sided. They have trouble answering questions about a reading assignment. They can't explain why a character in a book did something or how a character knew something. 

Some autistic people learn to talk eventually, but it is a very arduous process. They learn to talk, in the same way as NTs learn a foreign language. They have to translate the pictures in their head and turn them into words. Like NTs in a foreign language class, they need rules, verb conjugations, and lots and lots of practice. They memorize all the words to a movie, because their brains are desperately trying to figure out all the gibberish around them. 

Others never learn to talk at all. These kids are so cut off from our world of words that they stop bothering to interact at all. They go into their own worlds and are said to be not "related." 

Because autistic people have trouble understanding words and language, they compensate by being especially attentive to visual information. They are human GPS systems. They are glued to computers and videos. Autistic people who have good hand control may become wonderful artists. Others who are able to make the visual pictures in their head move may become engineers. 

In the past, scientists thought that verbal autistic kids had a better chance at leading a normal life than children who lead to speak gradually. They don't think that anymore. 

2. Autism is a Sensory Integration Disorder (SID). Autistic people are extremely sensitive to sound, touch, sight, smell, and taste. Not all autistic people are sensitive to the same things and in the same way. 

Some autistic people are so picky that they only eat three foods. Others can't tolerate the sound of a parade or a loud train. Others gag at the smell of a church. Others pick at the tags on their shirts. They don't like the feel of sand on their feet. 

These sensitivities fluctuate. Sometimes a child will be more sensitive than other times. Stress may be a factor. 

My son hates the feeling of tags on a shirt and long denim jeans. These sensitivities distracts him in school. He hates when people touch him lightly on the shoulder. He hates the smell of incense in a church. Sudden loud noises make him flee in terror. He stuffs his fingers in his ears during particularly loud movie previews. 

Other kids are almost dead to these stimuli. They are less sensitive than NTs. They don't feel pain when they fall and may love dirt and slime. They don't have enough control over their limbs to properly hold a pencil or run in a straight line. They try to have some sensation of feeling by flapping their hands or twirling in circles. The brain needs sensation to work properly. 

Some kids will be sensitive about one thing and not another. 

Eye contact is a sixth sense. Eye contact is visual touch. Autistic people may have trouble with eye contract; it makes them extremely uncomfortable. Avoidance of eye contact exasperates the language problem, because we take in millions of conversation cues by reading people's faces. 

These sensitivities create distractions, stress, and anxiety. 

SID problems can decrease overtime. Autistic people need gentle nudges, baby steps, to overcome these problems. However, they probably never go away. Some adult autistic people find relief with anti-anxiety medication. 

3. Autistic people are Extreme Systemizers. They like to put things in order and find patterns. They are a human Dewey Decimal System. 

Some autistic people, who have lesser deficits in other areas, can use this characteristic to their advantage. They find careers that prize systemizers — computer programmers or librarians. 

Others become so distracted by systemizing things that they close themselves off. They may systemize strange things that have no value and really should not be systemized. 

My son was an early systemizers of words. He was able to decode letters and written words at an unusually early age without any instruction. However, he was so consumed with systemizing and decoding words that it would distract him from the world around him. In nursery school, they learned to not seat him next to a bookshelf because the words were too distracting; he wouldn't listen to the teacher. 

Systemizers may have an extreme need to systemize the world around them. Like OCD, they like to have their bedrooms organized in particular ways or wear certain colored shirts on certain days. They like fixed schedules.

Because the world is not an organized place, this lack of organization will cause some autistic people great anxiety. They find peace in an ordered world. Anxiety then leads to a further shut down. 

 

What Now? Should I Panic?

No panicking allowed. If your child is like this, don't panic. There is a lot that can be done, and lots of kids grow out of the worst problems. You'll find good people to support you. This post has gone on long enough, so I have to cut it short. But if you have a question, leave it in the comment section.