Upside-Down, Inside-Out, Round and Round and Round

Intro

We called her the upside-down girl. The orphanage had described her as shy and quiet, but after her first two withdrawn and grief-stricken days with us, Maia, at 10 months, emerged as a laughing, active, and social baby, eager to explore – first her new mother’s face, and then the world. Far from being developmentally delayed, in several areas she appeared advanced; she spoke her first English words just before her first birthday, after hearing the language for only 6 weeks, and she walked on schedule at 12.5 months. But what she liked best of all, right from the start, was movement in space.

Or, rather… … she liked certain kinds of movement in space, and others not at all. The traditional rocking position seemed to distress her. She would tense and wriggle and avert her gaze. Sign of an attachment problem, I wondered? Yet her eye contact was great the rest of the time; she was interactive. And she loved to be held, especially face to face. She hated to be held only when she was horizontal. The Fisher-Price baby sling I had borrowed from a friend turned out to be a godsend to her. The first time she felt her body drop into place against mine in it, she startled slightly, and then relaxed. Home? Her eyes sought mine and locked on, locked in. The effect was almost as quick and precise as the click of the buckle I used to fasten us together. Something about the combination of swaying movement, firm pressure against her body, closeness to me, and freedom for her arms and legs seemed to soothe her.

Games in space

Over time she came to call the sling her “ga ga,” and she would bring it to me to put on, even when we were at home. I danced her around it in for hours (and lost about 15 pounds in five weeks!) When she got too big for it, I wrapped her in a towel and we would pretend. At four, she still occasionally asks for that game.

Another game, one played more often with her father and her adult brother, who lived with us at the time, was the “upside-down baby” game. In how many of those early photos taken with the males of our family are Dad or Brother holding her by the ankles or knees while she hangs with her hair dangling towards the floor? And in every one of those pictures she wears an enormous grin. You can almost hear her shouting “Again!”

 At age two, she would try the same stunt on her own at the playground, easily pulling her body up over the bars at the tops of some slides, hanging on tight with hands and feet, letting her head drop. “Quite a gymnast you’ve got there,” other parents said to me. They marvelled (approvingly or not) at my capacity to stay calm while supervising her antics. I was calm, or relatively so, for I knew her strength and superior balance. But I was also curious. Why didn’t the other children her age want to hang upside down that way? Why was she seemingly driven to do so? Why did she prefer hanging and swinging to almost any other activity? Why did she seem so much more focused and calm after an afternoon spent at the park?

And so I began to question….

A few months after we brought Maia home from China I had read an article in a magazine about something called “sensory integration dysfunction.” The author described a child who liked to swing (my girl?) but most of whose problems seemed to centre on tactile sensitivities. This child didn’t like to be touched, couldn’t stand certain textures, would complain vociferously about the tags in her T-shirts and even wear them inside out. Not my girl, I said to myself. Mine's not that sensitive. And promptly forgot about the article.

Sadly, I had never heard of sensory integration before that, so I did not understand the myriad ways it can express itself. As a former teacher of high school students I knew about ADHD. I knew about learning disabilities, and knew that most were related to processing difficulties. But more than that, or different than that, I did not know.

Our social worker had done little to prepare us for post-institutional effects. I didn’t know many parents of PI children. Such knowledge as I had, I’d gained on my own, through reading and list-serves. Our family doctor thought that Maia was developmentally “on track” and didn’t see any problems. And as a first-time parent, I had no basis for comparison.  

Boundaries and buzzy-busy-bright

“She’s a busy one,” people often said to me. So she was, and so she remains. But “busy” is a code word for “bright” as well as active, and I saw no reason for alarm. It was only when she reached the age of 3 and was still using my body as a piece of climbing equipment that I began to get seriously worried.

 Why, even with constant reminders, could she not seem to remember or respect peoples’ physical boundaries? Why (in the depths of winter, especially) was she crashing into things, falling on purpose, leaping from the furniture, leaping into my arms or onto my back without warning, spinning and never getting dizzy?

 Her pre-school teachers also expressed concerns; her fine motor skills appeared delayed, and her social and emotional skills, too. I had to agree with that one. Frustration tantrums had become all too common, along with the plaintive words, “I can’t” whenever she was required to learn a new physical task. She wasn’t dressing herself. She wasn’t drawing or playing with scissors. She couldn’t follow the directions at her gymnastics class and begged to go home. Yet she wanted to do these things; she desperately wanted to learn. And day by day I could see her self-esteem plummet and her negativity increase. From a bright, feisty but generally sunny toddler she had become a controlling, demanding, and frequently defiant three year old.

Attachment? Or, maybe….. Sensory Integration Difficulties?

We took her for an attachment evaluation. The verdict? No attachment issues. The doctor, a respected infant psychiatrist, speculated instead about “interesting wiring," though he said that he doubted she would meet criteria for a diagnosis of ADHD. "Her focus is good; her attention span seems normal."

 At that point I came across the book The Out of Sync Child. I cannot say that bells and whistles went off; I still was not 100% sure that was our problem, but I did think an evaluation would be worthwhile. Luckily, we have an excellent pediatric OT in our city. Two years ago, she assessed Maia as suffering from significant challenges particularly with the vestibular function, as well as fine motor delays. We worked together for a year, and the therapy was useful and, I would say, successful, though it can be difficult to measure results when a child is growing and developing. At almost 5, Maia finally developed handedness. Her fine motor skills have been advancing at a tremendous pace and while she remains slightly behind most of the girls in her kindergarten class, she is on par with most of the boys, and she copies well. Along with “handedness” came increased focus and reduced impulsivity. Her teacher describes her as an enthusiastic but respectful participant in class discussions.

I’ve since come to feel that Maia does, in fact, suffer from some mild attachment issues in addition to the sensory dysfunction – despite what we were told. Most professionals are still relatively uniformed about the particular problems our PI children can face and how these may manifest in slightly different ways than they do in children who are coming from the domestic foster/adopt situation. And the relationship between sensory processing problems and attachment is a complicated one. Symptoms can overlap – for example, children with both disorders show a similar need for control – but this need  may appear in different circumstances. And problems in one area can exacerbate problems in the other area. A child who is sensory defensive might resist eye contact, which in turn will interfere with the attachment cycle. A child who has attachment issues may resist rocking or other activities that could assist in developing important neurological pathways; this, in turn, can show itself in strange playground fears and aversions down the line. 

My sense is that at bottom, our kids’ issues, however they present, can usually be traced to problems with self-regulation (physical, emotional, and behavioural) that have resulted from trauma and neglect. At bottom, we are talking about a PTSD-type response and an over-active fight/flight reaction, which in turn leads to some unusual behavioural manifestations and also to compromised processing. But because our children experienced their trauma as infants, it may not show itself in the obsessive, repetitive play or invasive thoughts or imagery might appear in an older child or an adult. Our children may be diagnosed with ADHD, oppositional-defiant disorder, or even bi-polar disorder – but those labels may be more convenient than accurate. Why some post-institutionalised kids seem vulnerable and others do not is a mystery, but part of the answer may lie in their individual, inborn temperaments and their own particular gifts. Our daughter, for example, is an extremely bright child, verbally gifted. Even if she had been raised from birth in the same family, her development would probably have been asynchronous, as is true for many gifted kids. But in her case, those early months of orphanage life mean that she suffers subtle emotional and physical delays over and above what one might expect. That spells frustration for her – and for those caring for her.

We were unable to find a therapist qualified in attachment work. So for that, we’ve largely been on our own. The good news is that working on sensory integration issues  can be, and usually is, extremely beneficial for securing attachment as well, particularly if the OT agrees to allow the parent to participate in the sessions. In fact, recent research by Bruce Perry, Allan Schore, Stanley Greenspan, and the Institute for Neuro-Physiological Psychology in the UK (among others) suggests that therapies that make use of “body work” and that otherwise address the primary physiological problem of an overactive stress response build the strongest foundation for future development.

Parenting our daughter is an ongoing challenge. Like Joan Francis’s daughter Risa, like an anxiously attached child, she requires a lot of structure and a lot of love. We’ve also learned that in her case, a “sensory diet” can help. A day when she spends time outdoors, pushing and pulling heavy objects, climbing, or swinging, and time engaged in calming activities such as baths, playdoh, and the like is a day when she is more receptive to our discipline and to affection. As a parent, I feel I owe it to other parents and to professional to share what I’ve been learning.

What follows is a day when sensory issues overwhelmed. Maia was four at the time of this vignette.

ROUND AND ROUND AND ROUND

Occupational therapy can help Maia cope with her challenges in more adaptive ways; it cannot “cure” them. She has improved on several dimensions since we began to work with our therapist, but some weeks it doesn’t seem that way. And some days, she breaks down.……..

Wednesday afternoons, we swim. Maia is the oldest in her “parent and tot” group; other children her age are already taking independent lessons. She's a strong, athletic child with excellent gross motor abilities. But she prefers to stay with me, because she is (justifiably) afraid of missing instructions if left on her own. Children with vestibular weakness often suffer from concomitant auditory processing problems. In noisy and unfamiliar environments, Maia cannot distinguish “figure” from “ground,” what’s important to listen to, from whatever is not. So we go to swimming together, and I gently repeat all instructions, and it is good for our attachment as well as for her learning.

She loves baths, showers, sprinklers, shallow lakes with sloping beaches – but swimming in a public pool is difficult for her. First – the strange noises and smells in the change room. The scented shampoos, the roaring hair dryers, the loud voices, the flushing toilets and rushing showers. Today, however, marks our fifth week of lessons and she has become more used to these assaults, so she changes eagerly, puts her boots neatly into her cubby. Without being asked to, she mops up the mud prints she’s left behind and then uses the bathroom all by herself. We shower, and enter the pool area. She tenses her muscles and starts talking loudly in reaction to other loud voices and the splashing that echoes from the water, but the face of her now familiar coach is reassuring, and she does her best to focus. But – what’s this? They have taken away the stairs to the shallow end! She can’t climb down the steps to get into the water. I hold her hand, ask her to sit next to me at water’s edge. The coach is giving us instructions about how to enter the pool in the absence of those stairs. But Maia is too upset to hear her and is distracted by the sight of the stairs themselves, which sit like a beached whale on the pool deck, criss-crossed with yellow tape. Only after she watches the other parents and toddlers get in is Maia ready to try. Understand, it is not just the change that threatens her; it’s the loss of those stairs themselves. In the water (as in the side to side rocking position) she experiences gravitational insecurity. If her feet are touching ground she feels safe; when she can’t touch ground, she feels terrified, even in my loving arms. To lose the one place she reliably could go for a moment’s security during her half hour lesson is a significant blow to her.

But she’s brave. So brave. She wants to swim. She asks to wear her life-jacket, (another source of security), but the coach says not yet, not now. We need to practice our push-offs and our parent-assisted back and front floats without devices first. “NO!” Maia shouts, but she practices her floats anyway, always one step behind the rest of the class, but always trying. I hold her close. Her heart races. She talks non-stop. She soothes herself by making up pretend scenarios and inviting me to join the game: “Mum, pretend you’re going to be the fisher person and I’m the fish and you’re going to reel me in. Okay, now I’m going to fish, you’re a big one!” She wants the coach to play along. She’s really getting into the spirit of things.

And then…earlier than usual, and with only a minute’s warning, it is time to stop. We need to get out of the pool so the coach can give us our “progress reports.” And Maia isn’t ready. She tries to move in the opposite direction; she tries to hide, which is tough in open water when you can’t swim. She grips the side of the pool till her knuckles turn white. She wants to stay; she always wants to stay. But she has to go. Coach is saying so, Mum is saying so, and she knows another class is about to begin.

She gets out. But today she is just overwhelmed by change. The steps (real security) and the water (loss of balance) took away too much of her control. Instead of saying thank you when the coach hands her the “certificate” she spits a big mouthful of pool water at the coach’s leg. When I show my disapproval, she calls me a series of rude names. I get her to apologise to the coach and then tell her she will need to serve a time-in. She tries to run away. I follow her and give her a choice of time-in here or time-in when we get home. She chooses to serve it now. We sit together, watching the other swimmers. Afterwards, we shower. She seems a bit calmer; is able to get out of the shower without an argument. But then, on the bench next to our locker in the changing area she spies a stranger’s water bottle. Right next to our things, right where we might otherwise sit. She knocks it, purposely and deliberately to the floor. She stares angrily at the young woman who owns it. “Disgusting girl,” she says.

Spoiled brat? That’s what other people may see. That’s often what I feel. But no. Sensory overload leaves her overwhelmed, so that transitions, always tough for pre-schoolers, become perceived as a matter of life and death. Asked to do something more quickly than she could manage, she felt threatened and angry. Required by circumstance to share her own space with a stranger when she was still feeling vulnerable, she lashed out again.

And here, on the following web site www.healthatoz.com/healthatoz/Atoz/ency/sensory_integration_disorder.html

I learn:

“Those who have sensory integration dysfunction may be unable to respond to certain sensory information by planning and organizing what needs to be done in an appropriate and automatic manner. This may cause a primitive survival technique called "fright, flight, and fight," or withdrawal response, which originates from the "primitive" brain. This response often appears extreme and inappropriate for the particular situation.”

(Source: Gale Encyclopedia of Medicine, Published December, 2002 by the Gale Group; The Essay Author is Beth A. Kapes.)

”Extreme and inappropriate”  On her out-of-sync days, that’s my girl to a T. Upside-down, inside-out, and round and round and round. Raising her is a challenge, true, but it is nothing to her own challenges. May we both grow in patience as she grows. May she find physical and emotional balance. That is what a disorder of sensory integration leaves lost. 

(A version of this article first appeared on the AdoptionParenting page at yahoogroups, and it is now available for members of the Attach-China list and the SIDCHINA2 group, as well. Thanks to Sheena Macrae for editorial assistance.)

RESOURCES

Books:

 Kranowitz, Carol Stock. The Out of Sync Child and The Out of Sync Child Has Fun.

 Carol Stock Kranowitz is a pre-school teacher who has recently popularized the foundational work of A. Jean Ayres and others on sensory integration. Her explanations are clear and comprehensive and her tone is positive and parent and kid friendly. The suggested activities are terrific, inexpensive (for the most part) and fun for all children, not just those with SID.

ALSO: Answers to Questions Teachers Ask About Sensory Integration.

This is a book of forms, checklists, and classroom advice.

 Williams, Mary Sue, and Sherry Shellenberger. How Does Your Engine Run: A Leader’s Guide to The Alert Program for Self-Regulation.

 The Alert Program was designed by two occupational therapists to help kids learn to “read” their bodies’ signals and to give them the tools they need to modulate their own responses.

 Kurcinka, Mary Sheedy. Raising Your Spirited Child, Raising Your Spirited Child Workbook, Kids, Parents & Power Struggles.  

Kurcinka is best known for her popularizations of recent work on temperament and its role, but her suggestions are also helpful for parents and children affected by SID.

 Greenspan, Stanley, I. The Child with Special Needs, The Challenging Child, Building Healthy Minds.

 Greenspan, a proponent of “floor-time” (special one-on-one parent and child play time, on the child’s terms), is one of the few physicians who gives much attention to the role of sensory integration in temperament and development.

 Hannaford, Carla. Smart Moves: Why Learning is Not All in Your Head.

 Includes directions for several “Brain Gym” movements that parents and children can try at home to improve brain function.

 DeGangi, Dr Georgia, Ph.D   Pediatric Disorders of Regulation in Affect and Behaviour

 Is a therapist’s guide to assessment and treatment od sensory integration disorders in Children. DeGangi is one of America’s experts in treating SID. This book presents the state of the art in theory, research and treatment strategies  for infants and children with regulatory problems. Complete with comprehensive case studies, references and index, this wonderful book is replete with photographs, screening tools, detailed assessment procedures and integrated treatment approaches.

When the Brain Can't Hear : Unravelling the Mystery of Auditory Processing Disorder
by Teri James Bellis 

 Like Sound Through Water, A Mother's Journey Through Auditory Processing Disorder 

by Karen J. Foli (2002).

 Language Processing Problems, A Guide for Parents and Teanchers

by Cindy Gaulin (available from www.xlibris.com)

 Web Resources:

 Here I offer only a sampling. There is much available and following any one of these should lead to further information. 

 http://www.comeunity.com/disability/sensory_integration/

http://www.sinetwork.org

http://www.sensoryintegrationhelp.com/

http://www.geocities.com/~kasmom/sid.html

http://www.out-of-sync-child.com/

http://home.earthlink.net/~sensoryint/

 Auditory Processing Links:  

http://www.ncapd.org/

http://www.homestead.com/agertner/HOMEPAGE.html

http://www.nidcd.nih.gov/health/voice/auditory.asp

http://www.ldonline.org/ld_indepth/process_deficit/living_working.html

http://pages.cthome.net/cbristol/capd.html (capd links and more links- just keep clicking away)

ASHA (American Speech-Language-Hearing Assoc.) www.asha.org

American Academy of Audiology www.audiology.org

Fast ForWord www.scientificlearning.com

Earobics Step 1 and 2 www.earobics.com

Lindamood-Bell Learning Processes (including LiPS and V/V) www.lblp.com

 Products

 http://www.sensoryresources.com/

http://www.southpawenterprises.com/products.asp

http://pfot.com/about.htm

 Support Groups

 Some communities apparently have in-person support groups available to parents. Not mine! E-lists include one at www.sensoryintegrationhelp.com and several on Yahoo. The most relevant for us is SIDCHINA2@yahoogroups.Com

 Look also to resources on attachment (see Attach-China).