Doctor, what’s wrong and tell me what to do…

Perfect Baby…
Our special needs son W was born 18 years ago looking perfect, with a full head of shiny black-brown hair and gold and cream colored skin. He was our first, and only. Nothing on our Little Prince seemed unusual or damaged. He was so long that he didn’t start with chubby cheeks. In the Italian baby jumpsuit a friend had given him, he looked like a slender European Formula 1 race car driver, minus helmet. He was my Little Einstein Continue reading

ABCs of Behavior: Social confidence, Social storytelling, and Role-playing

Teach your children to be strong and resistant to stress in settings that would otherwise make them crumble, misbehave, or act out to get attention from peers. Parents of children of all abilities wring their hands over teaching their children to be appropriate in new situations, to turn way from peer pressure and go into new settings with confidence, whether it’s

  • peer-pressurea new classroom,
  • a new school,
  • an after school club or program,
  • a team locker room, or
  • a private party on a Saturday night.

Social Confidence

Continue reading

A-B-C-s of Behavior for Children, #autismdiagnosis #communicationdisorders #earlyintervention #EI #specialneeds #preK #latetalker

Good Boy, Bad Boy
When my son was two, a younger cousin bit him. I was shocked. Never, my son would never ever do that. He was an “easy” baby, not demanding, never clingy like other babies. Not my beautiful, perfect son.

What’s the Word: Autism diagnosis
When our son reached age three, he still wasn’t talking. I’d hear maybe 1 or 2 words in a day. A few more parts of syllables, here or there. I never heard “Momma,” and he never called for me . My name was a rare, mumbled sound like wawrah, an attempt at my first name.

At 3 years old almost to the day, our was diagnosed with severe language and cognitive problems. He’d spent a few minutes with speech and language pathologist, and she told us the bad news. Our son hadn’t learned “object permanence.” That means that objects continue to exist when he can’t see them, and people live beyond his view. “Object permanence” is what infants learn that makes peekaboo so much fun. Then he went to a developmental pediatrician who said it was Autism, and wouldn’t explain. She said, “Read this,” handing us a photocopy of the cover of a 700 page book by another developmental pediatrician. My husband was a lawyer whose charms included loving to talk a lot, to tell stories, and to crack jokes. His job involved reading hundreds of pages a week. Before the diagnosis, he had confided that having a “disabled child” was his worst nightmare. He immediately got the book out of the library and started to read. By about Saturday, he was finished. Cover to cover, without taking a day’s break, or and without making a comment to me. For the next four days, he was silent, making just a few monosyllabic replies.

Expelled from Pre-School: third time’s the charm
Soon our son was established in an autism pre-school program five days a week. He’d been tossed out of a day care center (only going 4 hours a week), and a Montessori school the previous year. Within a few months in this special program, he was having difficulty. He still wasn’t talking at all and couldn’t hold a crayon. The class had 10 children, 8 or 9 aides, two full-time teachers in one large, loud room, with a speech therapist next door. On its face, the program sounded terrific. He was miserable.He knew he couldn’t do what they were asking him to, and that the other children with autism could. He bit his aide once month, the next month bit a different aide several times, and so on. He was smitten. One day, a new child joined the class. A girl in a sea of boys. Blonde, silent, and adorable. One day at circle time, she was sitting at the circular table next to him, when he bit her. Her mother removed her immediately and permanently from the class. (In a future post, you’ll see that “the girl” and my son crossed paths again, with a different result.)

Bad Boy
My beautiful, perfect son who was never going to be one of the bad kids was now singled out. One of the classroom teachers took over as his aide. She kept him separate from the others, inside a squared-off set of child-proof gates, corralled all day. His work? “Object discrimination.” It sounds fancy, but he had to point at a small water bottle when told “water,” instead of pointing to a tissue on the table. The teacher would switch the objects’ places. He couldn’t do it, and the frequency of biting increased. (Another post will cover how, at age 14, I helped him get over this early childhood trauma.) It seemed now that he was biting the teacher every day, sometimes more than once. He’d attach himself to my arms now, too, with teeth that were large, sharp, using strong jaws. My forearms were increasingly bruised, and sometimes bloodied. In a parking lot once, he attached himself, and, desperate, I sank my fingernails into him, hoping he’d release before taking a piece of my flesh.

Breathe, dear reader, and remember this story has a happy ending.

Angels Come to Our House
My beautiful, perfect son was kicked out of the autism pre-school for behavior. The county program seemed even less well-staffed. So the school district agreed services would continue, but at our house, and I would have to find people to provide them. We found angels. Dr N, now tenured faculty at Columbia University, signed on to design our son’s program. I found a woman who had years of experience teaching children with autism in their homes, J from Alpine Learning Group Outreach, to work under Dr N. Within a half hour with J, she had shown me how to get my son off my arm. Self-defense, against a 4 year old! Hope! (The training is called crisis intervention training.) J’s quick lessons were the first step in getting our beautiful son to be our beautiful perfect son once again.

Look here next for: Crisis Intervention Training, concepts and resources

The next post will cover crisis intervention training concepts and resources with links. I cannot provide you with this training. Concepts and techniques are similar regardless of the age and size of the person. I can tell you, fearing the person you love or need to work with doesn’t help the person at all. You have to be safe, confident, and fearless.

ABCs of Behavioral Problems: Keeping Cool in a Crisis: being prepared for behaviors

Crisis Intervention Training
Behavioral crises involving people with autism are a common concern of professionals and parents. Parents don’t talk about them as much because of stigmas, but professionals rarely hold back. Sometimes the parent is blamed for spoiling the child. If so, I hope the professional has several children of his or her own, never needed to ask a question of a seasoned parent, and never made a parenting mistake with any one of their children. (People in glass houses shouldn’t throw stones!) Parenting is hard. Let’s avoid judgement and get down to work.

Crisis intervention training is not enough, but it is a necessary first step for parents and professionals: teachers, therapists, aides, and law enforcement. This post is appropriate for communication disorders. (I cannot claim to speak for mental illness.) Let me be clear. Generally, “aggressive” moves by people with communication disorders are a form of communication. Aggressive-Kids

Prevention is best. Many parents of people with autism suffer from the fear and memories of painful incidents of the past. The child’s behavior makes him a pariah, or changes how others treat him and his life choices.

First, however, you have to get everyone out of the current incident safely. The behaviors have to be addressed without judgement. Otherwise, behaviors can escalate and someone may be seriously hurt. Concepts and techniques of Crisis Intervention Training are similar regardless of the age and size of the person. I can tell you, fearing the person you love or need to work with doesn’t help the person at all. You have to be safe, confident, and fearless.

Crisis Intervention Training Should Include
This forum is not appropriate for providing crisis intervention training, but as a diligent and caring professional or family member, you should know what to ask for. The training involves learning and practicing a series of physical maneuvers that protect the responsible adult without harming the person with a disorder. If the people involved are verbal, de-escalation techniques will be covered.

Training should handle such situations as grabbing of clothing and grabbing of hair. This video from (a provider of instruction with which I have no relationship and whose training I have not reviewed) covers grabbing a shirt. 

It’s For You, & anyone living or working with people with developmental disabilities
Be prepared. Do not expect to need crisis intervention training. Do not give the training to someone who may abuse it, or abuse others. The person who could have triggered the incident may not know that he or she did, but the person who triggered it should generally step aside so another person can follow through with crisis intervention.

As a parent or professional evaluating the quality of a school, after-school, day, or residential program, check that staff and security personnel have this training. Sadly, crisis intervention training may be rare in the U.S. outside of some school settings. It is, however, perfect as topic for staff training sessions. Staff certification should be renewed every few years in any setting where physically inappropriate behavior may occur.

Here’s an example for sessions held for school transportation staff of Eden Prairie Schools:

The “A” in ABCs, an introduction to behavioral triggers
Antecedents are the “A” in “ABCs” of managing behavior.  Analyzing antecedents of a behavior is important, after the throes of an incident. Understanding these “antecedents” of behavioral problems will be the subject of further posts.

All situations that end in aggression have a kernel – medical or personal – in a concern that was not communicated effectively. These are examples from my personal experience with my son and other children with autism:

  • A middle ear infection causes pain, and the staff doesn’t understand how to help.
  • The child is expecting to see someone (a familiar therapist, a friend, a pet) at a certain time, and the person or pet isn’t there.
  • Lunch is “supposed to be” at exactly noon, and the child cannot tell you when he’s hungry, so 12:05 pm is “late.”
  • One kind of cookie is kept on the edge of the top shelf, and the child can’t see or reach it.
  • A migraine is coming on, and the child is in a public place.
  • When changing planes, the child knows a bowel movement is coming, cannot explain, refuses to leave a terminal restroom, nearly misses the connecting flight, and soils himself in-flight.

As someone who cares for and about people with developmental disabilities, I know we want to fix people. Now. That’s not realistic, but we can help, incrementally, and the people we care about can get better. Communication problems can cause a lifetime of misunderstandings, mistakes, and hurt feelings. As we fix the communication problem, we remove potential sources or future behaviors.

Coming up here: Why’d he do that! Consider “antecedents”

Copyright 2015, Laura Ann Weinberg

What is Autism – Love is the Drug (autism treatment, autism families and SLP/SLT, autism professionals)

What is Autism, anyway:
Autism can be slippery. We don’t know what it is. We give it a name. We diagnose it. Diagnoses shift (…DSM-IV, now DSM-V…) Autism doesn’t come with a set of medical charts showing where it comes from or how it does its business. We give drugs for it. But drugs are really given for something else, not for Autism. This drug may mask some symptoms for awhile in some people. That drug may cure an intestinal disease that hitchhiked in with the Autism. Neither drug changed or reduced the autism. Most symptoms of Autism don’t match up to any drug that’s ever been produced.

Love is the Drug:
The only drug that helps everyone with Autism at least most of the time more than doing nothing is …. training. We can call it therapy, or education, or play intervention. In each and every thing we do for someone with Autism, we’re pushing the individual with the disorder in a way that’s hard for them to do on their own. We who work with people with disabilities believe everything we do and do not do is changing a neural pathway, stimulating myelin production, improving coordination of the indirect pathways in the brain, and helping.

Tracking Progress = Watching Paint Dry:
Usually the progress is slow. If progress is fast, if there’s major improvement, you can bet that the person’s own neural network is healing. Even if the treatment made a difference, Autism is such a mystery that it’s arrogance to claim the treatment did it all. Give the child some credit, too, since it’s the child’s neural network that was reacting quickly to your stimulus. It was the child’s acceptance of whatever strange-looking thing you did with him.

Without Kids, Humans would be the next mass extinction:
There’s a child involved. (Whether growing or full-grown, they’re still our children!) They are unique individuals. (Grammarians, relax, it’s still a word in English!) You can’t assume that the interventionist – parent or professional – is a genius. You can’t blame the interventionist – parent or professional – for what you see as failure. Who sets the standard? What are we comparing progress against?
the boy next door who’ll get decent grades in a 2-year college?
our image we have of a “successful” disabled person?
the last kid we treated with the same diagnosis or symptom?

Parents: we all have them:
We all want our kids and students to be successful, in all circumstances, and with all kinds of people. Even poor matches between teacher and student are experiences that can help the child work through difficulty.

Let’s be kind to each other. When someone’s not kind, draw a line, but you’ll never know what the other person is going through. Behind closed doors, you don’t know if you’d ever want to switch places. I know enough speech and language therapists to say most are thinner skinned than the Wharton MBAs I went to school with once. I know lots of parents of kids with Autism, and we admit we’re often tired, worried, and skeptical.

Every one of us has limits. Some limits are regulatory. Some are fiscal or non-reimbursable. Parents’ limits are time and money and other children and maintaining a marriage. These limits are all real. Children don’t make steady progress on all fronts all the time. Regressions are normal. (Typical children lose 2.6 months of learning every summer! Focus on the child, and remember what the professional’s scope of practice is. Remember, don’t shoot the messenger.