Thursday, April 12, 2007

Ella graduated from Physical Therapy!

Lots of medical lingo, ask me if you need something clarified!

In late 2005 after several years of EEGs and MRIs related to her mysterious unspecified seizure disorder, we finally got Ella into some developmental testing related to her most recent MRI's revealing of abnormally low myelinated (white matter) areas in her brain. (This probably has nothing to do with her seizure disorder, though!)

The specialists we saw at UNC found her to be in the normal range for speech, hearing, vision, and issues relating to psychology. She was in the lower range according to the developmental pediatrician, the physical therapist, and the occupational therapist. In addition to OT and PT they recommended her for sensory therapy. We never did get sensory therapy covered by insurance, but her OT has worked on some things with her, and I have been doing a lot of reading on that front to address ongoing issues.

Ella received an evaluation from her OT a few weeks ago. She has made great strides, but continues to test lowest (two standard deviations below the norm) in the areas of manual dexterity and motor planning, but has some additional things to work on as well. She sees her OT twice a month, and we will probably re-evalulate in the fall.

Ella received an evaluation from her PT in the last few weeks, and I got the results today. Ella was given the Peabody Inventory at age 5 yrs 11 months, a fairly easy basic skills test compared to some others, plus she was at the top end of the age range suggested for administration of the Peabody. Her biggest areas of delay in PT were that she toe walked almost all the time (a neurological concern, we discovered) and still used the w-sitting position when she sat down, rather than legs crossed, poor muscle tone and several coordination issues. At that time, she scored between 36 and 48 months of age. She tested **two to three years** behind her chronological age at that time. Ella was given the BOT in March, a harder inventory, at age 7 yrs 3 months, and she scored

***AVERAGE*** !!!!

This is a huge jump in a year of therapy. Her PT suggested that they work in the next few weeks on an exercise program for her over the summer, and will probably recommend a certain number of minutes per week of bike riding and scooter riding and monkey bar crossing and rock wall scaling.. but after May, she gets to stop going to PT! We will check back in after summer and see how often we want to check in.

I am so thankful that we were able to have Ella evaluated at UNC, and that we have had such wonderful therapists to work with Ella. And I am so thankful that Grace has worked so hard. We are probably going to take Ella out for supper one night soon, and then go choose a new bike as a celebration for her hard work (since she has gotten too tall for her current one!).

I just wanted to share my excitement over my oldest daughter's accomplishment!

Saturday, April 7, 2007

Sensory Processing Disorder

I just wanted to post about this disorder, as it is one of the issues we deal with concerning our oldest child.

Ella was a high need baby (if you are unfamiliar with this term, here is a link to a checklist about that, sometimes referred to as fussy, intense babies who don't sleep! ) and I don't think ALL high need babies turn into children with sensory issues, but I think a fair amount do.

If you have not heard of Sensory Integration Disoreder or Sensory Processing Dysfuction, think of it sort of like dyslexia, but related to processing sensation rather than words and numbers. That's really simplistic, but gives somewhere to start. Great information can be found at these sites:


We first wondered about sensory issues with Ella because she hated having dirty hands and would ask us to clean her hands multiple times during a meal, even as a young toddler (hand! hand! hand!), and she would not eat meat. She seemed to have difficulty as preschooler in figuring out how to clean up after herself (she would get lost if you told her to put the books n the shelf, the clothes in the hamper, and the toys in the toybox), and when Maddie was old enough to put her own velcro shoes on, Ella would have trouble understanding how to coordinate taking her shoes off and switching them to the right feet, but Maddie at 18 months understood and executed it well.

Ella had some seizures as a 14 month old and a 4 yr old, and she had yearly EEGs and MRIs. At her 5 yr old MRI, we found that she had a low level of myelination in her temporal lobes, and I started being a bit of a mama bear about finding out why she had this low amount and what that meant for her. We had an evaluation done when she turned 6, and along with gross and fine motor delays, her team of specialists decided that she had significant enough sensory issues to warrant Sensory Therapy along with OT and PT. Sadly, we can't afford sensory therapy as it is not covered by insurance, but it said a lot to me that they recommended therapy for it.

The biggest things that are difficult on a daily basis for us are her ways of making her needs known (often tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever), hair shampooing with screaming and crying, lack of willingness to eat meat or try new foods with meat in them, clothes are too tight, show her belly, too itchy, too small, too big, tooooo something!, lack of desire to do outside play as it makes her too tired, poor posture and muscle tone as well as fine motor control get frustrating when doing school, and just in general, reaction to situtions out of proportion to stimulus!!!!

I read a great book called "The Out Of Sync Child" that really validated my suspicions about her issues, and showed me that her quirks all sort of fit into two categories, tactile defensiveness and proprioceptive/vestibular.


1. HYPERSENSITIVITY TO TOUCH (tactile defensiveness):

__ becomes fearful, anxious or aggressive with light or unexpected touch

(Ella reacts with fight or flight to this and may strike out)

__ as an infant, did/does not like to be held or cuddled; may arch back, cry, and pull away

__ distressed when diaper is being, or needs to be, changed

__ appears fearful of, or avoids standing in close proximity to other people or peers (especially in lines)

__ becomes frightened when touched from behind or by someone/something they can not see (such as under a blanket)

__ complains about having hair brushed; may be very picky about using a particular brush

(at 7 Ella still cries when her hair is brushed and screams when being shampooed)

__ bothered by rough bed sheets (i.e., if old and "bumpy")

(has specific bed sheets, heavy for weight, and often sleeps on the floor)

__ avoids group situations for fear of the unexpected touch

__ resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)

__ dislikes kisses, will "wipe off" place where kissed

__ prefers hugs

__ a raindrop, water from the shower, or wind blowing on the skin may feel like torture and produce adverse and avoidance reactions

__ may overreact to minor cuts, scrapes, and or bug bites

(elevate the limb! cancel social engagements!!)

__ avoids touching certain textures of material (blankets, rugs, stuffed animals)

__ refuses to wear new or stiff clothes, clothes with rough textures, turtlenecks, jeans, hats, or belts, etc.

(and will remember uncomfortable clothes still in he closet from a year ago!)

__ avoids using hands for play

__ avoids/dislikes/aversive to "messy play", i.e., sand, mud, water, glue, glitter, playdoh, slime, shaving cream/funny foam etc.


__ will be distressed by dirty hands and want to wipe or wash them frequently


__ excessively ticklish

(this too)

__ distressed by seams in socks and may refuse to wear them

(ys yes yes, seamless socks are the answer!!)

__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly

(has funky textured clothes, prefers skirts and loose yoga pants, and no turtlenecks or lacy sleeves or neckline)

__ or, may want to wear long sleeve shirts and long pants year round to avoid having skin exposed

__ distressed about having face washed

__ distressed about having hair, toenails, or fingernails cut

__ resists brushing teeth and is extremely fearful of the dentist

__ is a picky eater, only eating certain tastes and textures; mixed textures tend to be avoided as well as hot or cold foods; resists trying new foods

(does not eat meat, resists trying new foods)

__ may refuse to walk barefoot on grass or sand

__ may walk on toes only

(Ella toe walked for so long that she has permanently shortened heel cords and wears night braces to elongate them)


__ has difficulty with fine motor tasks such as buttoning, zipping, and fastening clothes

(Ella's manual dexterity scores are more than 2 standard deviations below the norm)

__ may not be able to identify which part of their body was touched if they were not looking


__ may be afraid of the dark

__ may be a messy dresser; looks disheveled, does not notice pants are twisted, shirt is half untucked, shoes are untied, one pant leg is up and one is down, etc.

__ has difficulty using scissors, crayons, or silverware

(scissors especially, and handwriting is not age appropriate)

__ continues to mouth objects to explore them even after age two

__ has difficulty figuring out physical characteristics of objects; shape, size, texture, temperature, weight, etc.

__ may not be able to identify objects by feel, uses vision to help; such as, reaching into backpack or desk to retrieve an item

(if she cant see her hands, she has trouble figuring out what they are doing or feeling)

VESTIBULAR SENSE: input from the inner ear about equilibrium, gravitational changes, movement experiences, and position in space.



__ avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds

(took her a long time to enjoy things besides swings and slides)

__ prefers sedentary tasks, moves slowly and cautiously, avoids taking risks, and may appear "wimpy"

(yes, doesnt want to risk take and is afraid of appearing clumsy)

__ avoids/dislikes elevators and escalators; may prefer sitting while they are on them or, actually get motion sickness from them

__ may physically cling to an adult they trust

__ may appear terrified of falling even when there is no real risk of it

__ afraid of heights, even the height of a curb or step

(has trouble navigating these things)

__ fearful of feet leaving the ground

__ fearful of going up or down stairs or walking on uneven surfaces

__ afraid of being tipped upside down, sideways or backwards; will strongly resist getting hair washed over the sink

__ startles if someone else moves them; i.e., pushing his/her chair closer to the table

__ as an infant, may never have liked baby swings or jumpers

__ may be fearful of, and have difficulty riding a bike, jumping, hopping, or balancing on one foot (especially if eyes are closed)

(at 7 still has difficulty with a bike, has training wheels and leans terribly to one side, as her muscle tone is not good in her hips and back, and her left side is weaker than her right)

__ may have disliked being placed on stomach as an infant

__ loses balance easily and may appear clumsy

(and her middle name is Grace, we really work on this!!!)

__ fearful of activities which require good balance


__ avoids rapid or rotating movements


__ has a limp, "floppy" body

__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk

(yes, as does her father)

__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach ("superman" position)

__ often sits in a "W sit" position on the floor to stabilize body

(did this until she as 6 and we were told she shouldnt be doing it!)

__ fatigues easily!

(you have no idea!)

__ compensates for "looseness" by grasping objects tightly

__ difficulty turning doorknobs, handles, opening and closing items


__ difficulty catching him/her self if falling

(this too)

__ difficulty getting dressed and doing fasteners, zippers, and buttons

(took a good long while, also related to manual dexterity)

__ may have never crawled as an baby

__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy


__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.

(yes, at 6 had delays to between 36 anbd 48 months old)

__ poor fine motor skills; difficulty using "tools", such as pencils, silverware, combs, scissors etc.


__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old

(yes, she does beginning cartwheels and she bats lefthanded, can write with both hands)

__ has difficulty licking an ice cream cone

__ seems to be unsure about how to move body during movement, for example, stepping over something

(yes, motor planning)

__ difficulty learning exercise or dance steps

(this is getting better with age and practice)

PROPRIOCEPTIVE SENSE: input from the muscles and joints about body position, weight, pressure, stretch, movement, and changes in position in space.



__ seeks out jumping, bumping, and crashing activities

__ stomps feet when walking

(yes, walks on her heels hard)

__ kicks his/her feet on floor or chair while sitting at desk/table


__ bites or sucks on fingers and/or frequently cracks his/her knuckles

__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime


__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible


__ loves/seeks out "squishing" activities

(loves to be steamrolled)

__ enjoys bear hugs

__ excessive banging on/with toys and objects

__ loves "roughhousing" and tackling/wrestling games

__ frequently falls on floor intentionally

(the rest of these sound like her younger sister, Lily!)

__ would jump on a trampoline for hours on end

__ grinds his/her teeth throughout the day

__ loves pushing/pulling/dragging objects

__ loves jumping off furniture or from high places

__ frequently hits, bumps or pushes other children

__ chews on pens, straws, shirt sleeves etc.


__ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing)

__ difficulty regulating pressure when writing/drawing; may be too light to see or so hard the tip of writing utensil breaks

(often, but this has gotten better with practice)

__ written work is messy and he/she often rips the paper when erasing

(nearly every day)

__ always seems to be breaking objects and toys

__ misjudges the weight of an object, such as a glass of juice, picking it up with too much force sending it flying or spilling, or with too little force and complaining about objects being too heavy

__ may not understand the idea of "heavy" or "light"; would not be able to hold two objects and tell you which weighs more

__ seems to do everything with too much force; i.e., walking, slamming doors, pressing things too hard, slamming objects down

(all the time)

__ plays with animals with too much force, often hurting them

(also, she would often not understand how to remove her hand, and might push the animal to be able to pull her hand back)

1. HYPERSENSITIVITY TO ORAL INPUT (oral defensiveness):

__ picky eater, often with extreme food preferences; i.e., limited repertoire of foods, picky about brands, resistive to trying new foods or restaurants, and may not eat at other people's houses)

(absolutely a small repetoire of foods, but lots of veggies and fruits, and most breads and pastas are ok... but meats, meat dishes, main courses, those are hard)

__ may only eat "soft" or pureed foods past 24 months of age

__ may gag with textured foods

(absolutely, even at age 7)

__ has difficulty with sucking, chewing, and swallowing; may choke or have a fear of choking

__ resists/refuses/extremely fearful of going to the dentist or having dental work done

__ may only eat hot or cold foods

__ refuses to lick envelopes, stamps, or stickers because of their taste

__ dislikes or complains about toothpaste and mouthwash

__ avoids seasoned, spicy, sweet, sour or salty foods; prefers bland foods

(yes indeedy)



__ difficulty accepting changes in routine (to the point of tantrums)

__ gets easily frustrated

__ often impulsive

__ functions best in small group or individually

__ variable and quickly changing moods; prone to outbursts and tantrums

__ prefers to play on the outside, away from groups, or just be an observer (no)

__ avoids eye contact (no)

__ difficulty appropriately making needs known

(yes to all of the above except those two I marked), and especially this last one, tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever)


__ excessive irritability, fussiness or colic as an infant

__ can't calm or soothe self through pacifier, comfort object, or caregiver

__ can't go from sleeping to awake without distress (waking was ok)

__ requires excessive help from caregiver to fall asleep; i.e., rubbing back or head, rocking, long walks, or car rides

(yes to the above)

Again, just wanted to share. Do any of the above sound like your child? I'd love to talk to you if it does!


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