Comparing Notes

The following article is found at KidPower.com's SID site. I cut and pasted it and italicized the areas that 1.) coincide with LMNOB's behavior, or 2.) are important to note.

One Mom's Synopsis
The Out-Of-Sync Child
January 1, 2000

Dear Friends,Family,Therapists, and Teachers,

I have written a special synopsis that you are about to read. It is a synopsis of the book the "The Out of Sync Child" as it pertains to my daughter Katherine Amanda Kelly. As you may or may not be aware Katherine was evaluated at 2 years of age by the Birth to Three System of the State of Connecticut. This evaluation came after we as parents had concerns about her development. Katie had not been speaking many words by age two and this concerned us. She also seemed to be delayed in her development in different areas compared to other children I observed in our different activities we attended.

Katie has never gone to daycare, as her father and I work alternating schedules to take care of her ourselves. I always felt that outside activites were important for her socialization. Since she was 8 months old, we have attended a Gymboree play program, Mommy and Me, swimming, library hour, gymnastics, and Gymboree music class. All these activities have been wonderful for Katie. She has always been an energetic child and craved all this activity. Some people have thought my schedule was too full but it is just right for us. Going to all these activites also exposed us to many different children of different ages. This helped us compare Katie's development and recognize developmental patterns that parents of an only child may not be able to recognize with no other children to observe.

After Katie's evaluation, we were told that she had Sensory Integration Dysfunction. We were unaware of what this really meant for us and for Katie until we met with a speech therapist and occupational therapist. They each started coming to see Katie once a week. Now, after months of therapy, Katie has started to speak many more words and has been improving her fine motor skills. She has improved and been developing in so many different ways. We, as parents, are overjoyed to see this wonderful transformation.

We have learned many things about SI dysfunction during the therapy sessions with Katie. We, of course, wanted to know as much as we could. Knowledge is power. The more we can know about Katie's situation, the more we can help her in her development.

I have read many reference books that deal with SI dysfunction but the one that gave me the most information was the "The Out-of-Sync Child". I read this book cover to cover and jotted down notes as I read. Every child is unique and not all children will have every symptom of SI Dysfunction. I will try here, in few pages, to explain to you what SI Dysfunction is and how its various symptoms relate to Katie.

I will start my synopsis by discussing the basic problem we call Sensory Intergration Dysfunction. Most children I have read about with this problem have no identifiable disabilities, such as cerebral palsy or impaired vision. They seem to have everything going for them: they're healthy, intelligent, and dearly loved. Yet they struggle with the basic skills of tolerating ordinary sensations; of planning and organizing their actions; and of regulating their attention and activity levels.

Sensory Integration Dysfunction is the inability to process information received through the senses. The dysfunction happens in the central nervous system at the head of which is the brain. When a glitch occurs the brain cannot analyze, organize and connect- or integrate- sensory messages. The result of SI dysfunction is the child cannot respond to sensory information to behave in a meaningful and consistent way. The child may also have difficulty using sensory information to plan and organize what she needs to do, so she may not learn easily.

I have read that intervention at a young age is the most important as the brain is still "plastic" and can be molded alot easier than when a child gets older. So diagnosing Katie at a young age is a celebration! We are very pleased we have been able to identify the problem at two. Many times I have heard this called the invisible disorder as the child looks completely normal and many times the symptoms the child really has are overlooked.

So basically SI dysfunction is the inability to process information received through the senses. Katie may have difficulty "reading cues", either verbal or nonverbal, from her environment. The brain is disorganized so her behavior is disorganized. Every brain is unique as every fingerprint is unique so, as I mentioned earlier in my introduction, no child will exhibit all the symptoms.

I will go through some symptoms now. A child can be what is called oversensitive or undersenstive or can be both. A child with mild dysfunction is slightly impaired and may find ways to compensate so as I said before the problem is frequently overlooked. I will go through the different senses and how Katie relates, be it undersensitive, oversensitive, or both.

I feel Katie is both undersenstive as well as oversenstive, at times, when we talk about the sense of touch. Sometimes she avoids being touched by people. This depends on whether she is having an on or off day. Sometimes her nervous system is on and she can handle the touch. Other times it is off and she cannot handle the touch of someone or cannot tolerate feeling certain textures of clothing or food. She is also undersenstive in the way she may be unaware of pain, temperature, or how some objects feel. Sometimes she seeks more stimulation and may paw through toys, chew on objects, or bump into people or furniture.

When it comes to movement she is definitely undersenstive as she seeks more stimulation in this area. She loves to spin, rock, swing, twirl and hang upside down. She is definitely a daredevil!

She is also undersensitive when we discuss body position. She is sometimes clumsy and sometimes her actions are inaccurate. She also seeks more stimulation when it comes to sight. She wants to touch everything even though she can see perfectly fine.

She has also been known to be undersensitive to smell. The odor of dirty diapers has never bothered her along with many other unpleasant scents. She is also undersensitive to taste.

She has been very oversenstive (seeks less stimulation) to sight in the past. When she was first evalutated she had very poor eye contact. This has improved dramatically after therapy. She also has been oversensitive to sounds. Our Green Machine vacuum cleaner is very upseting to her.

When we look at behavior of children with SI Dysfunction the thing that relates to Katie the most is she has an unusually high activity level- she is always on the go. She is in constant motion. I have been able, recently, to get her to concentrate on an activity for 15 minutes. This is an improvement as it used to be five minutes maximum. Most of the time during an activity, she is running back and forth from one thing to another. She also seems to have self-regulation problems. She is sometimes unable to calm down once she is aroused. She may not always have this problem. As I said before, one day she is "with it". The next she is "out of it".

Symptoms of SI Dysfunction are often misinterpreted as psychological problems. These may develop if the underlying cause of SI Dysfunction is neither recognized or addressed early. SI Dysfunction is not a learning disability but can lead to them. The child with SI Dysfunction is a "child at risk".

Katie could have problems with vision. Connecting sights with touch sensations can be a problem for her. She may not know, just by looking, that a nail is sharp or a hammer is heavy.Katie has had some eating problems. She often does not chew carefully. She may overstuff her mouth because she does not realize how much is in there. She has been improving in this area.

Children with SI Dysfunction may have elimination problems. She may have poor bowel and bladder control. She may not perceive wetness or may have insufficient muscle tone to "hold it". Katie does not seem to be able to hold it in at all, from
what I have observed.

She also has some problems with sleep regulation. She may need a long afternoon nap or does not nap even when she is tired. She also can be overaroused at night.

SI Dysfunction often coexist with allergies. Katie is allergic to penicillin.

There are many possible causes for SI dysfunction and Katie has each one of these from what we understand. The cause can be genetic (parents have some SI dysfunction), medications and complications prenatally, prematurity, postnatal hospitalization, and birth trauma (C-section and lack of oxygen after birth).

As I said previously, young children respond well to early intervention- the central nervous system is still flexible and can change or be changed. Treatment helps the child process all the senses so they can work together. The senses are a combination of the near senses and the far senses. The near senses are: the vestibular sense (inner ear) which processes information on movement, gravity, and balance; the tactile sense (skin) which processes touch; and the proprioceptive sense (muscles, joints) which process information about body position and body parts. The far senses are: smell, taste, touch, sight, and sound.

Sensory Integration is the neurological process of organizing the information we get from our bodies and from the world around us for use in daily life. SI Dysfunction is the brain¹s inability to process sensations efficiently. There is a "traffic jam in the brain". There is a "short in the circuitry" and Katie is not responding in an ordinary way to ordinary sensations. She may be hyposensitive, hypersensitive, or be "on and off" and have a combination of these extremes. For example she has been hyposensitive and not responded to our dog Pebbles growl and subsequently was bitten. One day this bite may not phase her as she does not feel it but another day she may feel such a bite.

Katie is often very hypersenstive when it comes to touch as she is now constantly seeking it. She loves bear hugs as she is seeking deep touch. The child with tactile dysfunction will often curl their hands into loose fists to avoid touch. I found this information interesting as Katie always did that since she was an infant and will still do it but with less frequency now. This can affect their fine motor skills if they always have their hands in that position.

There are alot of characteristics of tactile dysfunction that Katie possesses. She is hypersensitive in that she prefers a hug to a kiss; sometimes overreacts to physically painful experiences; fusses about hats, mittens, and footwear; dislikes having her face washed; dislikes having her fingernails trimmed (you would think I was torturing her!); may walk tiptoe; is excessively ticklish; resists brushing her teeth; and resists having a haircut.

Recently she had a haircut that went very well compared to past haircut experiences. We had been working on her sense of touch in therapy and had a
therapy session the day of the haircut where we focused on preparing for it. It
made a world of difference.

For stimulation a child with tactile dysfunction may need to touch everything in sight, enjoys vibration, may prefer excessively sweet foods, and may use their mouth to investigate objects. Katie often likes to touch everything, loves vibration, and will sometimes still use her mouth on objects. Alot of time it is to open things she cannot yet do with her hands. She is gradually stopping this behavior as her fine motor skills improve.

Katie is definitely hyposenstive to vestibular sensations, Katie craves movement but her movements are sometimes disorganized. Linear movement can be soothing to Katie. She may rock when upset. It is kind of a tranquilizing self-therapy.

Most children have language problems like Katie where they use gestures and are more talkative after intense vestibular experiences such as sliding down a long slide. With vestibular hyposenstivity Katie constantly wants more movement! Climbing is her passion - to her everything is a ladder.

The vestibular and auditory systems work together. Language and speech are related to movement. Moving activates the ability to speak.

Another sense to be concerned with is the proprioceptive sense- one's own position sense; the unconscious sense of body movement. When you have an out-of-sync proprioceptive sense, manipulating objects may be difficult. Katie may put too much or too little pressure on objects, struggling to turn door knobs or breaking toys without meaning to do so. For sensory feedback Katie may do "bumping and crashing" into people or things, stamp feet on the ground when walking, or kick her heels against her chair.

Having an occupational therapist meet with Katie helps her develop her nervous system. Katie's actions are not her choice. No child chooses to be disorganized. What she needs are opportunites to integrate all sensations. "Sensations that make a child happy tend to be integrating".

In the book they mention keeping a record or your child's activities. Both of Katie therapists write up a record of each visit and it includes their concerns and suggestions for activites at home. It also is a written update of her progress. I have filed those in order of dates and keep my own notes with them. Doing this synopsis has also been a way for all of us to understand where Katie has been and where she is now in her development.

There are many activites we have done with Katie to promote sensory integration. They are too numerous to mention all of them here, but to give you an idea I will mention a few. We have done water play, finger drawing, sand play, used a feelie box (hide items in a box of beans), playdough, oral activities (flutes, bubble blowing), handling pets, swaddling, people sandwich, back rubs, dress up, hoppity hopping, rolling, swinging in a parachute, general swinging, spinning (on sit and spin), sliding, jumping on a trampoline,walking on unstable surfaces (clatter bridge),rocking, balancing on a large therapy ball, going up and down stairs, pushing and pulling (lifting groceries or pushing the shopping cart),pillow crashing, joint squeeze, carrying heavy loads (gallons of water or milk),bear hugs, body squeeze, manipulating small toys and objects, moving through obstacle courses, playground games, balloon games, clapping and tapping and drum beats.

There has been so much advice given in all the books I have read on SI Dysfunction. I think the most important advice was the following insights: to pay attention to your child (remember that your child's problem is a physical one and the indigestion of the brain causes her behavior-she can't help acting the way she is acting); know your child's strengths and weaknesses (get as much information as you can); anticipate responses (develop strategies to cope with negative emotions before they occur);empathize (understand the child's feelings and reflect them back);provide structure (establish routines and schedules); be consistent with discipline; and become your child's advocate.

I think that last piece of advice is why I wrote this synopsis for Katie. I need to educate adults who need to know about Katie's abilities. SI Dysfunction is invisible and people tend to forget or disbelieve that a significant problem affects my child. My job as her parent is to inform you so you can help my child learn and develop to her fullest potential.

Written with love and hope for a bright future...