Unpublished – Written for the now-defunct clubmom.com, August 2001

Before takeoff, you buckle your seatbelt and listen to the flight attendant review emergency procedures. You hear that if the oxygen masks drop, you should adjust your own before assisting your child. Likewise, if you are on a lifelong journey as a special mom, you must care for yourself so you can effectively care for your child.

Self-care, however, requires TLC (Time, Liberty, Cash), resources often in short supply. Kathy Vestermark, mother of four, cherishes time for herself. “I gain stamina to advocate effectively for my child with multiple disabilities when I take time to do those things that ensure my self-preservation. Easier said than done!” Kathy adds, “My husband often reminds me to do something for myself. It’s hard not to give endlessly to others – especially to my son. I worry that if I relax my efforts, so will he.”

Psychologist Griffin Doyle, PhD, comments, “Parenting a unique child is a most difficult adjustment.” Coloring the parents struggle often is their guilt about not possessing sufficient emotional resources to match their internal image of an ideal, all-courageous parent. “Parents who respect, admit, and work through their guilt or other agonizing feelings truly are caring for themselves,” he adds.

Also, self-care can be a priceless model of self-esteem for the child to emulate. Balancing your needs with your child’s is the ticket. Here are suggestions from moms who achieve this balance:

1) Exercise daily. Donna Keating, whose five-year-old daughter has sensory processing disorder, says, “Usually, moms assume the task physically and emotionally of the child. It zaps every part of you. Exercise is so essential to relieve everyday stresses. I stick to my work-out schedule and rarely feel guilty about taking time out for myself.”

2) Volunteer for groups that are needier than you. Sorting clothes at Goodwill or serving soup at a shelter, you may feel less self-pitiful.

3) Take classes. Nanette Bevan, mother of three boys, one with Down syndrome and one with spinal muscular atrophy, says, “Pay for a course and go.” Nanette crafts glass and silver jewelry. Learning new techniques or working in the studio, she is in the flow. She stops worrying about her sons’ problems and returns home refueled.

4) Listen to soothing music. The Mozart Effect recordings and Nourishing the Caregiver (available through www.SensoryWorld.com) are produced specifically to relieve stress and restore order. A loftier idea is to get the piano tuned and make music.

5) Talk to someone, besides your husband. If you talk only to him, Nanette advises, you ll probably keep bonking up against each other over the same issues. A sympathetic friend or relative can be a lifeline, especially if the person shares your sense of humor. Consulting a psychotherapist is also extremely worthwhile. Donna comments, “When your child has special needs, you spend every waking moment thinking and planning to stay ahead. Moms require quantities of support that a spouse, relative, or friend can’t easily provide. On days when the light at the end of the tunnel seems nowhere in sight, I find some relief networking with moms with similar children.”

To find a support group, visit websites related to your child’s disability. Many have message boards for sharing concerns, information, and even belly laughs.

6) Seek respite care for an afternoon, evening or weekend, at home or a licensed facility.Finding respite care is challenging. It can be cost prohibitive, and providers may be scarce. Perhaps your local government can guide you to grants to help you meet the costs. Groups that provide respite care, sometimes free, include:

• Local chapters of national organizations that offer Parents Night Out, such as Easter Seals (www.easter-seals.com)
• ARCH National Respite Network (919-490-5577 or www.archrespite.org/respitelocator)
• Campus Ministries or public service groups at colleges, where students may gladly volunteer to baby sit for kids as special as yours
• Hospitals and Red Cross chapters that train providers of children with special needs

7) Nurture good babysitters. Amy Cunningham, whose son’s visual dysfunction lowers his tolerance for new people and situations, advises, “Once you find good babysitters, woo them. Treat them like honored family members – and pay them well. Do whatever it takes to ensure their return.”

8) Barter time with similar parents of similar children. If you are single, maybe you can watch your child and other kids simultaneously. A babysitting co-op may also work well. To locate one, consult neighbors, community newspapers and bulletin boards.

9) Think positively. Amy says, “I take better care of myself, my son, and everyone else I love when I not only accept what is, but also acknowledge the secret, sweet, up side that makes my life seem divinely designed.”

When you find the time to care for yourself, you will see your family’s spirits soar. Buckle up, and let’s go!

 

Published in Child Care Information Exchange magazine (May 2000), and in Curriculum: Art, Music, Movement, Drama – A Beginnings Workshop Book (Exchange Press, 2006)

Typically-developing children are usually adaptable. They sing and dance, play rhythm instruments, and willingly try traditional preschool experiences. Children with special needs, however, may prefer sticking to the same-old-same-old activities that make them feel successful.

Whatever the skill level of your preschoolers, a variety of sensory-motor activities in your curriculum can satisfy most children’s needs. Music and movement activities, with their flexible structure, can foster every child’s creativity and competence.

These stories illustrate how children of differing abilities play together at St. Columba’s Nursery School in Washington, DC.

1) Music and movement allow children to use their imaginations.

Quint has spinal muscular atrophy. He has little use of his lower body. As a result of extensive and intensive therapy, however, Quint’s upper body is strong. Using a wheelchair, he maneuvers expertly outdoors and inside.

He excels at singing and rhyming, at parachute games and rhythm band activities. He welcomes enacting playlets, such as “The Gingerbread Man.” When the farmers and animals run, run, as fast as they can in pursuit of the Gingerbread Man, Quint joins the chase in his wheelchair. “Watch!” he says. “I can do it myself!”

Quint is decidedly less enthusiastic about up-and-down activity songs, such as “The Noble Duke of York.” He mutters, “I hate that song,” and who could blame him?

Still, the musical activities he shuns are often the ones other children love. While inclusion is the name of the game, and sensitivity to Quint’s feelings is crucial, the other children have needs, too. Balancing the needs of all the children is all-important.

Quint’s classmates are a varied bunch. Several children have marvelous motor skills, while others are at various points along the developmental bell curve.

One day the program includes a game designed to strengthen the sensory-motor skills of body awareness, motor coordination, flexion and extension, listening, and beat awareness. We sit in a circle, legs in front.

The singer on the phonograph record instructs us to raise and lower our feet and wave them in big arcs. Most of us do our best, while Quint slumps and scowls.

Next, the singer tells us to move our arms, shoulders, and head – up, down, and all around. Quint can do this. He sits up tall and easily complies with each of these demands.

Then he says, “I have a good idea. Let’s lie on our tummies.”

Hey! Cool! We have played this game before, but never on our stomachs. Quint’s compensatory strategy sounds like fun.

We roll onto our stomachs and repeat the activity. Quint cannot raise his toes but can lift his arms, shoulders and head. His agility impresses the other children. “How do you get your arms so high?” one asks.

Pleased, Quint says, “Oh, I’m just really good at that.”

Then Giorgio asks, “Can we do it on our backs?”

Following Giorgio’s suggestion, we flip over and repeat the game, lifting our body parts into the air. We discover that when our bodies rest on the floor, resisting gravity is easier.

Then Emma wants to try the game lying on our sides. Ooh, that is hard! Charlotte suggests trying it face-to-face with a partner. That’s funny!

Instead of a five-minute warm-up activity, this game absorbs the entire half hour. The children’s creative collaboration, regardless of their differing needs, is too purposeful and fun to stop.

2) Music and movement awaken children’s brains.

Zack, lost in his own world, exhibits symptoms of autism. His play comprises lining up cars and banging together two plastic blocks. His language skills are severely delayed. When he is spoken to, his limited responses are more gestural than verbal.

He seems to enjoy coming to music with his class, but we aren’t sure. Sometimes he joins in the movement activities; other times he tunes out.

His classroom teacher remarks, “If only we could learn how to give Zack a jump start!”

One day, I’m rounding up Zack’s classmates to come to the music room. The other children are congregating in the corridor. Zack is still in his coat, gazing dreamily at his coat hook, stuck.

I ask, “Are you ready for music, Zack?”

He nods. Otherwise, he doesn’t move.

I try a different tactic. I pick him up, give him a bear hug and rock him side to side. To the tune of “Twinkle, Twinkle, Little Star,” I repeat: “Are you – ready for – music – Zack?”

Suddenly, Zack comes alive. His eyes light up. He laughs. He returns my hug and leans into the rocking motion. After I set him down, he whips off his coat, hangs it neatly on his hook, and leaps into line. “I’m ready!”

What’s happening? Is the combination of singing, deep pressure, and rocking the technique to arouse Zack?

Walking behind him and pressing firmly on his shoulders, I start the song again, making up rhymes that are inexpert, but good enough:

Are you – ready for – music – today?

Let’s get – moving – here’s the – way.

Now we’re – walking – down the – hall,

Here we – go – one and – all,

Are you – ready for – music – now?

Let’s go – in and – take a – bow.

Zack loves it and participates in the music class as never before.

Now, to get Zack’s attention, we sing while hugging and rocking him. The words needn’t make sense, rhyme, or even be there. Humming does the trick, too. The tools that rev him up are melody, deep pressure, and rhythmic motion. This approach helps him get in sync.

3) Music and movement allow children to be in control.

“No, I won’t. You can’t make me. I’m the boss of my body,” is Fiona’s mantra.

Her diagnosis of oppositional defiant disorder (ODD) is not surprising. We know that she struggles to be in control because she feels powerless. To help her learn to be the legitimate boss of her own body, we require more than a label. What can we offer this contrary, needy child?

Resistive experiences! Resistive experiences benefit everyone. Pressing different body parts against the wall, carrying heavy buckets of sand, kneading mudpies, digging, shoveling, sweeping, and raking are examples of resistive activities. Hard work is fun! And for children who resist everything, resistive experiences can be a potent prescription.

In the music room, a game planned with Fiona in mind employs resistive, stretchy latex bands, often used for exercise or physical rehabilitation. The children sit on the rug surrounding three piles of bands. Red bands are for kids who feel a little sleepy. Green bands are for kids who feel strong. Blue ones are for kids who feel r-e-a-l-l-y strong. The children consider this information, choose a band, test it, change their mind, select another, and prepare to play.

Fiona, of course, refuses. Children like her cannot be jollied along. The reason is not that they won t participate, but that they can t. That s all right; we are not in a rush here. “I’ll leave the extra bands on the rug,” I say. “When you re ready, you can choose one.”

The game is a follow-the-leader activity. While a lively instrumental rendition of “Yankee Doodle” plays, the first leader steps onto her band, holding the ends in her hands, bending and straightening her knees. The other children follow her example for 16 strong beats.

The second leader centers the band behind her back and pumps her hands forward and back. The others follow. One by one, we go around the circle, and everyone has a turn.

Meanwhile, Fiona sits against the wall, watching attentively. She sees the fun everyone is having even the teachers. She hears the participants clamor, “Let’s do it again!”

Suddenly, Fiona jumps up. “I’ll do it,” she growls, “but I won’t follow any leader!” She snatches a blue band (the most resistive) from the pile.

The music starts again.

Fiona ignores the leaders and invents her own movements. Who could object? At the moment, she is not interfering with anyone, is having a good time, and is gaining physical and motor control of her own body.

4) Music and movement strengthen children’s problem-solving and motor-planning skills.

Shep has dyspraxia, which means he has difficulty planning his motions and organizing his body to go through a sequence of unfamiliar movements. Some symptoms of his disorder are poor motor coordination, social immaturity, and emotional insecurity.

The musical game today is tapping rhythm sticks. I splay the sticks out on the rug. “Take one smooth stick and one bumpy stick,” I say.

As the other children reach for sticks, Shep hangs back. He wants to participate but doesn’t know how to begin.

I hand him a pair, saying, “Here are your sticks. Feel how this one is bumpy; this one is smooth. Now, come be my helper.” I open my arms and indicate that he can sit on the floor in front of me.

Shep whispers, “I don’t know what to do.” I whisper back, “We’ll help each other.” I adjust the sticks in his hands and place my hands over them. Working as one, we tap his sticks together, on the floor, on his knees, in the air. I guide his motions as the game continues, actually putting the sensation of motion into his muscles. Gradually, I let go. By the end of the game, Shep has scooted back to the circle. He is doing a fairly good job of watching his friends to figure out what to do.

When music time is over, and we have sung the “Good-bye Song,” and the children are lining up to return to their classroom, Shep turns back and grins. “That was fun,” he says. “That was easy!”

Zack, Quint, Fiona and Shep could very well be placed in classes for children with special needs. However, both they and their typical peers benefit from their inclusion in a mainstream preschool. Here, the emphasis is not on speaking in complete sentences, doing only what the teacher says, or doing things the “right” way. Instead, children are given opportunities to heighten their arousal level, use their imaginations, and develop motor-planning and problem-solving skills.

Thank you, music and movement!

Posted on SPD Foundation’s website (May)

Sensory Processing Disorder (SPD) is not classified as a learning disability, but it can certainly hamper a child’s ability to learn. To illustrate, here are stories about two preschoolers whom I taught in my music and movement room at St. Columba’s Nursery School in Washington, DC.

Robin, 4, is over-responsive to touch sensations (she avoids them). Larry, 3-1/2, is under-responsive to movement (he craves it). Let’s look at these intelligent, healthy kids with an eye on how sensory issues are not only getting in their way now but may also interfere with learning and behavior in the future.

ROBIN

Robin has Sensory Over-Responsivity. She avoids being close to other children and shies away from adults, too. The possibility of being accidentally touched by them makes her extremely anxious. She also avoids messy play. Touching fingerpaints, mudpies, sand, playdough, glue, and bubbles makes her very uncomfortable–even threatened. Therefore, she scoots away from her preschool classmates when it’s time to sit on the rug for a story. She refuses to participate in art projects. She resists sitting at the science table. “I hate science,” she says, turning her back. “It’s yucky.” She avoids cooking and “gooking” activities in the classroom. At snack time, she becomes upset when a drop of juice spills on her skin or even on the table.

Robin likes to dance, but not if the game is Ring Around the Rosy, because she doesn’t want to hold hands in the circle. And not if the song is about whirling leaves, and the musical game is to hold a real leaf and twirl around the room with it. She likes to sing, knows all the words, has a good sense of rhythm, and enjoys chanting rhymes. But when offered rhythm instruments to accompany the song, she shoves them away. She crosses her arms and tightens her lips.

Now, rhythm instruments aren’t messy, are they? They’re not slimy or sticky or smelly. But Robin refrains from touching them, anyway. Unlike her curious classmates who are eager to explore objects in their environment, she just says “no” to picking things up and examining them. She disdains putting on dress-ups, playing with hand puppets, and drawing with crayons. Churning ice cream? Making snowballs? Picking up worms on the sidewalk? Washing doll babies? Pouring sand from one container to another? Finger painting in shaving cream? No way.

Robin is missing many concrete, hands-on experiences that are necessary for abstract learning later on. She is also missing making connections to other children. Tactile overresponsivity gets in Robin’s way, physically, socially, emotionally, and yes, cognitively, too. As she gets older, learning may become increasingly tough. If she hasn’t handled many different objects and toyed with many different textures, she may not understand concepts such as hard and soft, wet and dry, heavy and light, prickly and smooth, sticky and slippery, fragile and enduring. She may be mystified by challenges to estimate an object’s size and shape, weight, and density. She may struggle to make sense of math, science, and art. Expressing herself in words may be limited, because of her limited experiences and participation in the world around her.

For the moment, her teacher is aware of Robin’s tactile dysfunction and has found some ways to entice her into the play. For example, she invites Robin to come to the art table when only one or two children are working there, so Robin doesn’t feel crowded and anxious. She offers Robin individual finger mittens (snipped from vinyl gloves) to slip on her fingertips. She keeps a bucket of water nearby for Robin to rinse her hands immediately after she touches something objectionable. She lets Robin sit at the head of the snack table, so other children have less chance of grazing against her.

The teacher’s accommodations do help Robin for now. But what do you guess may happen when Robin goes to kindergarten and the great beyond? Will she be able to work in groups with other children, as expected? Will she be competent manipulating scissors, rulers, compasses and pencils? Will she function smoothly in the big, busy classroom?

LARRY

Larry is an impetuous daredevil. He does not appear to have much sense of how to protect himself. You might see him scrabbling up to the top rung of the jungle gym (where other kids know instinctively not to go) and leaping to the mulch below. Bam! He lands in a heap and scrambles to his feet, covered with mulch, grinning.

More, more, more.

Larry always needs more movement experiences and needs them to be more intense than other children’s. For instance, he craves rotary movement on the tire swing. Whereas twirling for a few minutes satisfies most children, Larry spins hard and fast for 20 or 30 minutes. Should his teacher invite him to play Duck-Duck-Goose or to go on a treasure hunt, he says, “No, thank you. I just want to spin.” Spinning is his favorite activity. The teacher respects his needs and lets him spin, although she worries that he is missing most of the activities that his classmates enjoy.

Off the tire swing, Larry runs everywhere, but stopping is hard. He trips and falls often. His teacher says, “Larry is like the Titanic. Throttles wide open, full steam ahead!” He frequently bumps and crashes into his schoolmates, pawing them to the ground for a bit of wrestling.

One day, The Gingerbread Man is the program du jour in my music and movement room. First, I tell the story on the felt board. During the story, the children shake jingle bells and sing, “Run, run, as fast as you can. You can’t catch me! I’m the Gingerbread Man!”

Larry is impatient: “Let’s go! Let’s go! Finish the story!” He doesn’t want to sit; he wants to run, run, as fast as he can.

His classroom teacher gently restrains him, applying the OT technique of deep pressure. She sits behind him, straddles her legs around him, squeezes his knees to his chest, and rocks him. The pressure and rhythmic motion are soothing. He closes his eyes and begins to tune in. Now he sings the Gingerbread Man’s theme song along with the other kids.

Meanwhile, I conclude the felt board story and show the children how the room is set up for the playlet. On the bare floor, all around the rug, a large circle of masking tape indicates the road. At one point on the road is a red paper stop sign. The idea is for the Gingerbread Man to run once around the rug and then halt on the stop sign. The other characters in the story will chase him, but never actually catch him.

As I point out the other props, the children watch attentively. They are so invested in the activity that they ignore Larry, who has wriggled away from his teacher’s embrace. While his classmates are learning how to enact the story, Larry places his forehead on the rug and pivots his body around his head.

Now each child gets to choose a part to enact: the Old Woman, the Cow, the Pig, the Fox, etc. Larry jumps up and clamors to be the Gingerbread Man. “I know this story,” he says eagerly. “My Mommy reads it to me all the time.”

Larry is a good listener, that I know. Even when he’s twirling or rocking, he can still pay attention to what is said or sung. But is he a good visual observer? Can he use his eyes to focus and attend? We’ll see.

The playlet begins. Larry knows the story and song… but not the significance of the red stop sign on the floor. He wants to participate… but can’t plan and carry out how he is supposed to act and what he is supposed to do. I repeat the information, and he says he understands… but he still has trouble stopping. I hold his hand and run beside him… but he still has trouble stopping. “Larry is doing it all wrong!” the Horse complains. “He’s messing us up!”

Larry is confused and unhappy. He falls in a heap on the rug. His classroom teacher sits nearby and rubs his back while the other children enact the story several times, until they’re satisfied.

Will Larry succeed in elementary school?