Sunday, December 24, 2017

Headaches, Tantrums and Tears

"Much of what I do begins with uncertainty."
-Autism therapist
 
Pain travels up the back of your neck, knifes your gray matter, saws at your skull. Your head throbs. You close your eyelids to squeeze out light and movement, cover your ears to minimize the effect of sound. You rub the tender muscles at the top of your spine and place warm palms over pulsating pain.
 
You have a headache.
 
You twist the childproof lid off a bottle and swallow three Advil. Sit. Hold your head. Eat chocolate. Wait for the quiet.
 
But. What if you were wrapped in a package that didn't recognize where the world ends and your body begins? If light was a whirling wave, sound a vibrating nightmare? And big body movements that settle everyday sensations now inexplicably cause your body to ache? What if you couldn't identify the location of discomfort or communicate the need for relief?
 
An everyday headache might roar unchecked through your body like an out of control train. Your skin, usually hungry for sensation, would throb and complain. You might cover your eyes, scream, flail. Push loved ones aside, slap walls, kick and sob, until your face was an explosion of blood vessels and coursing tears.
 
Behaving in a manner that looks as much like a tantrum as a body in pain.
 
According to the Mayo Clinic, headaches are generally caused by chemical activity in the brain, nerves or blood vessels in the skull, muscles in the head and neck. There are a multitude of reasons a person might get a headache. For example, exercise, stress, tension, tears, and (in our family) allergens. Most headaches are not life threatening.
 
Before a person with pre- and becoming-verbal autism can communicate the source of pain, he must first recognize that there is pain. He can then begin to associate words with the sensation. And obtain effective treatment.
 
When you love someone who can't tell you what's wrong, attending to his feeling-related needs can cause a heart wrenching quandary:

How do you teach a child "something hurts" without telling him something hurts since you don't know for sure that something hurts? What if he's actually sad? Mad? Hungry, thirsty, tired, wants his daddy?
 
What if the crying is "just" a tantrum?
 
Consider too: in autism, as with typically developing children, feeding a tantrum attention undesirably breeds…more tantrums.
 
Which can lead to headaches.
 
We help our child with autism discern pain-related feelings with words. When he injures his finger, for example, we say, "that hurts" and show him how to create and repeat the phrase using his talker. We acknowledge his anger. Identify body parts. Read aloud. We seek teachable moments all day, every day while working with therapists, teachers and loving, involved family members to create an environment that encourages language use.
 
What to do when, in spite of your best efforts, there are tantrums and tears anyway?
 
Sit. Hold your head. Eat chocolate. Wait for the quiet.
 
Then dust off your words and…try again.
Bedtime read aloud

Sunday, December 17, 2017

Wonder Boy and his Talker


Super Daddy accepts an AAC device from Theresa and Jim Edwards
and Sophie's Run.
Wonder Boy hurried to the end of the hallway. He smiled. He giggled. He jumped up and down and squealed. Super Daddy stepped into the corridor and waited.
 
Wonder Boy sped forward. He jumped, using his momentum to sail high into Super Daddy's arms.
 
Augmentative and Alternative Communication (AAC) occurs anytime a person communicates without words. It's sign language. A written note. A nod, wink, grimace. It's a shaken head or pointed finger. AAC is a giggle, squeal or smile. AAC is also language facilitated by computers.
 
November 15, 2016, Super Daddy accepted an AAC device on behalf of Wonder Boy. The "talker" was a gift from Jim and Theresa Edwards and Sophie's Run, an organization founded to honor their daughter, Sophie Edwards, and provide Assistive Technology (AT) to individuals who need help communicating.
 
Sophie communicated with her eyes.
 
"…we found an eye gaze computer that Sophie could operate. It took months to locate the sources to fund the $17,000 device, only to have it delivered 1 week to the day after Sophie's funeral." http://www.runsophies5k.com/about_us
 
Some individuals don't understand facial expressions or body language. Talking is hard. Remembering doesn't come easy. When a person has difficulty processing words, a communication device can help.
 
"There are two types of aided systems—basic and high-tech. A pen and paper is a basic aided system. Pointing to letters, words, or pictures on a board is a basic aided system. Touching letters or pictures on a computer screen that speaks for you is a high-tech aided system." http://www.asha.org/public/speech/disorders/AAC/
 
 
Happily, in the beginning, there was Amy, who created Wonder Boy's first Picture Exchange Communication (PECS) book, a collection of photo tokens that helped Wonder Boy begin to express his needs and wants. Amy taught Wonder Boy and his family how to use the PECS system.

Wonder Boy continues to use his PECS book.
Soon after, Wonder Boy was enrolled in a highly rated school for special needs children, where his skills expanded. His tantrums and self injurious behaviors (SIBS) decreased as his ability to express himself grew.
 
Educators at his school recommended Wonder Boy to receive a communication device.
 
Today, Wonder Boy uses his talker at school to create grammatically complete sentences and other assignments. He uses it to identify needs and wants.
 
At home? We're still learning how to help Wonder Boy use the device effectively.
 
Wonder Boy hurried to the end of the hallway. He smiled. He giggled. He jumped up and down and squealed. Nonnie stepped into the corridor.
 
"No, no, no!" Wonder Boy exclaimed. He shook his head and frowned.
 
Using an ipad we demonstrated how to find the needed words. Wonder Boy independently copied the movements on his talker, pushed a button and the machine spoke.
 
Wonder Boy looked up. He smiled. He giggled. He jumped up and down and squealed. "I want Daddy," he said.
 
And then? He flew.
 

Sunday, December 10, 2017

Unconditional

Downstairs, Wonder Boy was engaged in therapy. Voices murmured, paper shuffled. Toys clattered.
Upstairs, the house was quiet. Christmas tree lights flickered. The refrigerator hummed.
Finished practicing piano, Amaze Girl worked her projects. Books, pencils, crayons, markers, pens. "Nonnie," she said, without looking up. "I love…" She paused. "…the way you love me. No matter what."
I do love this sweet girl. So. Much. Around the moon on a spoon. Now and forever. To the end of time and back again.
No matter what.

Sunday, December 3, 2017

Transition in Autism and Divorce

Transition Be Like...
It's Transition Day! When the children return following a visit at their other home. Would they be fed and rested? Teeth brushed? Clean? What would they need to return to balance? Food? Sleep? Sensory squeeze? A bounce on the trampoline? In the words of Forrest Gump: "you never know what you're gonna get."
 
Transition…shatters the status quo…It's leaving any activity, especially when it's "preferred," for any other activity, preferred or not.
 
This day, the door opened and two happy people bounded in. Amaze Girl beamed. "We went to Dollar Tree!"
 
In autism – and divorce – the most stressful transitions are when children are transferred between two divergent homes. With adults who refuse to communicate, participate, cooperate. Whose parenting styles, in the words of one clinician, are "substantially different."
 
There may be exhaustion. Hunger. Loss of words and eye contact. Inability to focus. Crusty teeth. Tears, stims and Self Injurious Behaviors (SIBS). It can take two days to balance, feed and rest little bodies so work – growth, recovery, progress - might happen again.
 
Just in time for the next transition.
 
When an estranged parent chooses to be absent from the everyday, gives up the work of parenting to a partner and refuses communication with her co-parent, transitions are made yet more difficult. A child's ability to learn may be compromised. His growth inhibited. Her social and life experiences limited.
 
When parents don't work together? It's. Hard. On. The. Kids.
"…the relationship between the parents is a critical component to a child's proper development…" Judith Wallerstein, Second Chances: Men, Women and Children, a Decade After Divorce
(Read Judith Wallerstein's 25-year study, "The Unexpected Legacy of Divorce": http://fellowshipoftheparks.com/Documents%5CUnexpected_Legacy_of_Divorce.pdf)
It's not just about the kids. Adults who step away from parenting opportunities miss out too. Because love grows out of seeds planted in the smallest seeming moments.
  • Make smiley face pancakes for breakfast.
  • Write a note and tuck it into a homemade school lunch.
  • Drive her to school and/or pick her up at the end of the day.
  • Wait with her for the school bus to arrive when it's not your custodial day.
  • Attend the school musical, open house, class play, Halloween and/or Christmas party.
  • Visit for school lunch. Go to recess. Meet her teacher and friends.
  • Turn off the tv. Take him outside. Play.
  • Be present at transition. Speak to your co-parent.
Children crave attention from both parents all the time, every day, even-when-it's-not-your-weekend. Children love unconditionally no-matter-who-you-are-and-what-you've-done (or not done). They don't care whether you work or stay home, live in a big house or small apartment. They're not interested in the car you drive, clothes you wear or how great you look in that selfie.
 
They just want you. Present. Available. Grudge-free. In the big things. And the small moments.
 
Because sometimes all it takes to ease the stress of transition, keep a child's learning on track and make her happy? An outing to Dollar Tree.