Thursday, July 12, 2018

The Out-of-Sync Child Grows Up (Book Notes)

Many years ago, I read The Out-of-Sync Child to better understand Sensory Processing Disorder (aka Sensory Integration Dysfunction) since both Olivia and Sophia have it. There was a companion book, The Out-of-Sync Child Has Fun, which had many ideas for doing engaging and fun activities with children who have SPD.

As the girls became older children and teens, the activities weren't as age appropriate. So, when I saw The Out-of-Sync Child Grows Up by Carol Stock Kranowitz I knew I needed to read it so I could learn more about how to help the girls as they went through their teenage and adult years.

The book is a combination of information about SPD, strategies for dealing with different elements of SPD, and essays by teens and parents of teens who have SPD. This blend of perspectives was very insightful and provided good information and ideas for moving forward with the girls. Many of the strategies we already use. However, there were some new ideas that we can try as well as reassurance that the girls aren't the only ones experiencing these challenges. 

Some things that stood out that I want to remember:
- Certain boys and girls respond to unremarkable experiences in remarkably unusual ways. They may resist going places and being with other people. They may reject huge...or crave them constantly. They may go, go, go...of lack get-up-and-go. They may dress sloppily, eat only pasta, drop and break everything, whimper or rage over "nothing" for no apparent reason, insist on doing things their way, and act immaturely for their age, even as they grow. With their late and slow, or rapid and intense, or otherwise "off" responses, they seem out of sync with other people and the world.
- SPD occurs in the central nervous system when one's brain can't react typically to sensory messages, coming from one's body and environment, in order to function smoothly in daily life.
- "I was 11 when I finally learned to ride a bike because of my balance issues and 18 when I learned to drive because I had trouble with space and where the car was on the road and especially with parking."

Sophia's first bike ride of the year.
(April 5, 2011)

- "I was notoriously messy. My room looked like a tornado ran through it..."
- "As you get older, you'll be more aware and in tune with your body....I have learned to control how I respond to sensory challenges."
- "I tolerate irritants, like having my teeth cleaned, because I know they will go away."

Sophia pulling out Olivia's wiggly tooth.
(April 23, 2014)

- Auditory-language skills, based on the auditory sense, enable a person not just to hear sounds and words but to understand and respond to them. Activities dependent on good auditory-language skills include:
     => Listening to the teacher, remembering and following directions
     => Articulating speech sounds clearly enough to be understood
     => Engaging in conversations, answering questions, and making apt comments
     => Using language for verbal and written self-expression
     => Using auditory feedback to self-monitor voice volume
- Imagine extreme examples of what things feel like. Imagine wearing scratchy sandpaper clothes that make you itch all over, all day. Imagine washing your face in a buck of perfume. Imagine feeling as if you're going to fall off a cliff when you walk a few steps. Imagine sitting right near the stage, next to a rock band's amplifier.
- The goal is to help all children and adults manage their sensory challenges so they can lead satisfying, productive lives.
- A subtype of Sensory Modulation Disorder is sensory over-responsivity - causing the person is a "sensory avoider" to shrink from stimuli (e.g., malodorous, spicy, jolting and prickly stimuli, but also mild everyday stimuli can quickly make the sensory avoider irritated...very irritated...or angry and thoroughly miserable."
     => Light, unexpected touch can be bothersome. Being kissed or caressed makes them uncomfortable.

Olivia wearing a fireman's hat at the 
annual fire department's open house.
This was a challenging experience wearing
the hat and something over her face.
(October 9, 2007)

- For sensory cravers, there's the interoceptive subtype. Someone can eat a whole pizza or a gallon of ice cream, and then some more, to get the sensation of being full.
- For Sensory Discrimination Disorder, there's a vestibular subtype. An example would be never learning to ride a bike because of poor coordination and balance.
- There's a visual subtype. An example is learning how to drive. A teen could have difficulty knowing where the car is on the road, where other cars are in relationship to hers, and especially how to parallel park.

Sophia is driving the Jeep so she can bring in a load of pumpkins.
She's 10 years old in this photo.
She's driving from the field and through the pasture. 
She opted not to drive through the backyard and to the driveway.
(October 16, 2011)

- The auditory (hearing) subtype means that someone could have difficulty understanding jokes and puns, a teacher's verbal instructions, or what a friend just told her.
- The gustatory (taste) subtype means that they can't discriminate when she has a bad taste in her mouth and should brush her teeth.
- Self-blame abounds. Teenagers with SPD may feel week and inadequate. They may wonder, "If other people can tolerate noise, odors, escalators, and wool mittens, if other people can keep calm in stimulating situations, if other people can do this and that, why can't I?"
- Some teens attempt to cope by turning away from other people and becoming loners.
- "If someone with SPD says something's bothering them, take it seriously. If it isn't fixed, it will get worse and worse."
- "We're just like everyone else, except more sensitive to sound, sight, touch, smell, everything in our environment."
- "If I say I need a minute or two, give me time and do not rush me. Don't punish me for needing a break."

The girls resting with some of the pets on the bed.
They would alternate between homeschooling and resting.
(April 2, 2013)

- Strategy for sensory demands that give a person trouble: Break it down into its sensory components. For example, with toothbrushing: Does the toothbrush hurt your gums? Does the taste or smell of the minty toothpaste with artificial sweeteners gross you out? Figure out what type of toothbrush works best and what type of toothpaste is palatable.
- For shaving: use a shaving cream with a texture and scent you like to help with desensitizing the skin. You can also use deep pressure to massage on the shaving cream.
- Challenges with clothing: "I don't like the tag's feel against my skin....It's too tight."
- Some teens with sensory challenges like their clothing loose; others like it tight. Some like it hot, preferring layers; other like it cold, wearing shorts, t-shirts, and sandals in the winter.

Girls wearing loose dresses. 
These were the most comfortable for them 
since they were tight against their skin.
(March 23, 2008)

- "I would scratch so hard because the pain of cuts felt better than what the clothes felt like on my skin."
- "I would take burning hot baths until my skin would turn red." (This is being under-responsive to temperatures.)
- Buy clothes a side too large; they will give you less skin friction. Or, if snug clothes are more comfortable, wear bodysuit shapewear underneath.
- Look for tagless shirts to avoid the irritation and stinging.
- At home, go barefoot or just wear socks.

Sophia cutting fabric. She wears socks in indoors.
Olivia prefers to go barefoot indoors and 
not wear socks - even when wearing shoes or boots.
(July 20, 2009)

- Consider buying "preconditioned" clothing from a consignment or thrift shop.
- In the house during the winter, use a humidifier to keep humidity in the range of 40-60 percent to reduce static and prevent dry, itchy skin.
- Find activities involving deep pressure that desensitize your skin and feel good, such as having someone push against you, being rolled over and under a big therapy ball, and relaxing under a weighted blanket.
- Always put some food on the table that the choosy eater finds acceptable.

Olivia helping make homemade pickles.
Pickles are one thing that she enjoys eating.
Lunches and dinners often times include pickles.
(September 1, 2010)

- Driving: avoid busy streets, because there may be too much going on to process the movements, noises, lights, and so on. Practice a long time on easy roads before going out on highways and more traffic.
- Do hatha yoga.
- "I became aware that I can't understand what the person next to me is saying because there is so much noise."
- When the going gets tough, sit down and pull over - and breathe. Don't push yourself past your breaking point.
- Use the time you spend traveling from place to place to learn new things. Listen to soothing music if you must concentrate on driving. Listen to audiobooks and interesting interviews if you are traveling on the bus, train, or airplane.

Music we've checked out of the library.
(Taken on June 28, 2013)

- Drape a "lap buddy" (pillow or tube sock filled with beans or fish-tank  gravel) on your thighs or shoulders to provide calming weight.
- Fidget with handheld items that are appropriate for the place (Chinese therapy balls at home, squeezable gadgets in public places).
- Advocate for yourself in a school setting and let instructors know if certain things bother you or if you need extra time and a quiet room for exams.
- Spend lots of time outdoors, ideally in the country or woods. Looking, listening, and moving outdoors will enrich your understanding not only of the subject you're studying, but also of biology and earth science.

Girls enjoying being outdoors.
They are exploring the pond in the west pasture.
(Taken on March 30, 2011.)

- Listening to instrumental music when your work involves reading and writing; and music with lyrics when work is manual - like painting or raking.
- Get at least 30 minutes of whole-body exercise preferably outdoors, every day and at least three hours before you go to bed.
- For two hours before going to sleep, avoid electronics that can interfere with relaxation and suppress the release of melatonin, which brings on drowsiness.
- Relax with a calming activity: rock in a rocking chair; take a warm bath; read a real book or magazine.

Olivia reading to Montague.
(Taken on December 3, 2012.)

- Block out house or street sounds with a fan or white noise machine.
- Ways to create a sense of belonging: Do activities together such as preparing food, walking the dog, doing errands, watching a movie, playing board games, organizing photographs, or designing scrapbooks.
- Become "compassionate collectors." A socially-active enterprise has innumerable benefits for the family and community. Not only does this work encourage mindfulness of others, but it also nourishes the sensory systems and develops praxis. Examples: grow and/or prepare food to bring to a shelter for homeless people. Collect clothes, toiletries, and cosmetics or food; and then sorting, boxing, lifting, and carrying the items to a shelter.

Sophia and Olivia with some of the books they collected
to create the first-ever library in Lesotho, Africa.
(Taken on May 30, 2012.)

- "My inability to pick up on social cues, coupled with my mental and emotional dysfunction...skewed my thought process. My extracurriculars were nonexistent."
- "I developed an addiction to the internet. When I wasn't in class, I was on the computer....I never went to parties, never drank, and never did drugs. I didn't go to parties...because I felt like I needed a direct invitation."
- "I rarely had contact with other members outside of group events....I still feel like I need permission to join in with others."
- "Accumulated sensory input, especially noise, can be way too much to handle, which is why I often isolate myself in my room with the door shut."
- "Those of us with SPD spend more time with our families than with peers, especially if family members are caring and accepting and try not to push our buttons."

The girls' First Communion.
Olivia was almost 7 years old and
Sophia just turned 9 years old.
(Taken on January 10, 2010.)

- "While our self-confidence may not grow as quickly, and we may not be as well prepared for adulthood, we still benefit greatly from having tight-knit family bonds."

The girls with my mom and me.
A rare three-generation photo.
(Taken on February 9, 2014)

One of the mothers of a daughter with SPD said, "Raising my daughter has been one of my most joyful and rewarding challenges." I couldn't agree more!

1 comment:

Rita said...

This was really informative. I think all three of these books must have been such a help to you and the girls. Excellent post! :)