Sensory
Modulation: (The
way Alex processes information from his
environment)
- Hyper-Sensitivity
to Visual Stimuli à
in order to focus clearly your eyes
are supposed to automatically move in & out and rotate to allow
for
the distance and size of the object… and your pupils are supposed
to
automatically contract or expand to allow the amount of light
needed for
clarity… Alex’s eyes don’t always get the right information to
accurately
focus… when this happens he becomes sensitive to light… everything
is
enhanced 100x… too bright, too dark, too much color, etc… his left
eye
will become ‘lazy’ and he sometimes has ‘double vision… & his
eyes
will burn, turn red, get puffy and water like he has allergies… we
have to
make sure he has sunglasses in every car & saline spray to
soothe his
eyes… & cool clothes if it gets really bad.
- Seeks
Peripheral Stimulation à
you’ll notice that Alex holds objects close to the side of his eyes
&
looks at things out of the corner of his eyes… he’ll have his
airplanes
‘fly’ past his eyes… we have to be careful that he’s not doing this
while
he’s walking or he crashes into things
- Difficulty
Making Eye Contact à
Alex cannot concentrate on looking at you and listening to you at
the same
time… so when you’re talking to him let his eyes wander over your
face…
and if he’s reading or focusing on anything else visual speak to
him
softly and give him a few seconds to register what you have said
&
respond to you
- Defensive
reaction to the taste, texture, and consistency of food and drinks
à
Alex has a delayed swallow response… so he has to have bite-sized
food
that is super saturated for him to swallow without choking… that’s
why we
have to make sure his meat is cut small and we always have ranch
dressing
& Gatorade with us… if he’s not at home he always uses a straw
to
drink… he picks what food he can tolerate at the particular time,
and
sometimes his environment is too crazy for him to feel comfortable
eating
anything... he also has difficulty with textures (like crunchy
peanut-butter), tastes (currently it’s anything grape ‘triaminic’
flavored) and consistencies (like tapioca)… so
dinner time can get interesting… Alex
also needs super tart/sour tastes and hard gummy-chews (deep
pressure to
teeth & gums) to help him concentrate…
- Hyper-Sensitivity
to Unexpected Touch Imposed by Others à Alex
experiences an increased or
exaggerated startle response (like a baby’s ‘Moro reflex’ or
response to
loud noise) to unexpected touch… this can be very disorienting and
frightening for Alex… so if he is concentrating on something and
doesn’t
see you approaching just let him know before you touch him,
speaking
softly
- Hyper-Sensitivity
to Unexpected Noise à unexpected
noise is especially
disorienting for Alex… loud noises really hurt his ears and cause
him to
panic, especially fire drills & loud car alarms… again, you’ll
see an
exaggerated startle response, but Alex will also hear ringing or
buzzing
in his ears for an extended period after the unexpected noise… his
hearing
is extremely sensitive (he can hear silent alarms) so noises in
general
can be very distracting and disorienting… and everything is
amplified for
Alex, so sounds like bees or mosquitoes are extremely disorienting
for him
& he panics very easily… he has
wax earplugs to block noise and foam earplugs to filter out noise
just for
this reason, and anytime we know he will be in an area of loud
noise we
make sure he has them in beforehand … the only other option is to
remove
him from the noise immediately.
- Increased
Sensitivity To Detergents, Fabric, & Texture Against Skin à
Alex can only tolerate brushed / soft cotton clothing… no synthetic
fabrics… only Tide or Wisk detergent… I have to double rinse his
clothes,
first with just water, then with only Downey fabric softener… I
have to cut
all tags out of his clothing completely… he can’t tolerate
embroidery on
his clothes or any type of scratchy material inside his clothing…
he has
to have loose clothing, including his shoes, because he cannot
tolerate
binding clothing at all… we have to cut his hair right before he
takes a
shower, and he has to put a layer of powder on his
neck/shoulders/ears/face beforehand… we have to be very careful
with bug
spray, sun screen, even the amount of chlorine in a pool or
pollutants at
the beach… any irritation to Alex’s skin creates a raised red rash
(like a
huge hive) that he has to take benadryl for immediately.
- Decreased
Ability to Regulate Body Temperature / Sensation à for
Alex, he either doesn’t realize that
he is hot or cold until it is extreme… or some days he’s just
hyper-sensitive to hot/cold temperatures in general… he cannot
tolerate
extreme temperatures of food or drink, but he’s better with cold
than hot…
& he fluctuates from either a decreased sensitivity in that he
doesn’t
even realize when there is something on his face/hands or he
becomes
hyper-sensitive to anything on or near his face/hands (obsessive
about
washing hands or cannot tolerate washcloth on face).
Sensory
Discrimination: (Alex’s
awareness of his personal space)
- Decreased
Awareness of the Potential of Self Injury à Alex
isn’t always able to determine or
recognize when an activity crosses the safety threshold (climbing,
crossing traffic, etc...)… when he becomes overwhelmed by the noise
or
commotion of his surroundings he will just seem to be oblivious to
his
surroundings or to what he is doing…
- Delayed
Protective Response à part
of his neurological immaturity is
that Alex doesn’t get the signal from his brain in time to throw
his hands
up to break his fall or protect himself while falling, tripping,
etc... his neurologists assure us that this is
something that will resolve itself, but until then we have to make
sure
he’s not doing anything that will result in injury for him…
- Over
Sensitivity and Under Sensitivity to Pain from External Sources
à
if Alex sees the injury coming he feels
it more (hyper-sensitive)… if he doesn’t see it coming he is not
aware of
it and is at risk of further injury (hypo-sensitive)… so if Alex
sees a
bee sting him then it really, really, really hurts… but if he
doesn’t see
the bee he doesn’t feel it at all … this is especially tricky with
sunburns, sprains, scrapes, or bumps on the head, because you can’t
judge
the extent of the injury until enough time has passed for Alex to
process
the pain completely... Alex ended
up with a pretty nasty allergic reaction to a bee sting that we
didn’t
even know he had received until 3 or 4 hours later!
- Decreased
Awareness Of Body Position In Space à eye-coordination
is the ability of both eyes to work as a team… your brain fuses the
information from each eye to create a 3-D picture of your
environment… Alex’s
brain doesn’t always process what he is seeing correctly so he has
trouble
judging distances & he has difficulty with depth perception…
like
looking through a pair of binoculars or a microscope that isn’t
positioned
correctly in front of your eyes… so he’s either bumping into things
or
going ‘out of his way’ to avoid them… part of this has to do with
his
ability to judge the amount of force needed to move something or
pick it
up… so he drops things and knocks things over… and sometimes his
movements
can seem a little ‘rough’… especially when he is physically or
mentally
tired… or if his environment is too noisy or there is too much
commotion
going on.
- Unable
To Maintain Or Regain Balance When Changing Surfaces à
not just visually…Alex has trouble keeping his balance when the
texture
(tactile input) or look (visual input) or level (balance input) of
his
environment or path changes… so he
can trip while walking from grass to sidewalk, walking down or up
stairs, walking
from linoleum to rug, and even walking from white sidewalk to black
pavement… this ability becomes more reduced when the noise and
activity of
his environment increases or if he’s tired.
- Increased
Fear of Having Feet Off Of the Ground à
this is known as gravitational insecurity… Alex has always been
unable to
tolerate being suspended in anything but an upright position… he
becomes
completely disoriented and panics, stiffening his limbs &
throwing
them out to protect himself from falling… this was especially
difficult
when he was little & you were the person scooping him up… it
takes a
while for Alex to recover from this… he’ll be very clumsy until his
brain
re-boots…
- Difficulty
Registering The Need To Go To The Bathroom à
this has to do with Alex’s awareness of his ‘bodily functions’… it
always
used to surprise him if he burped or farted when he was little…
this is
especially true when the noise and activity level of his
environment is
increased… he doesn’t realize he has to ‘go’ until the last minute…
results in pain & constipation for Alex, so we have to make
sure he
stays on a strict schedule & drinks enough liquid every day...
Sensory
Praxis: (Alex’s
awareness of the order in which tasks
need to be completed)
- Difficulty
With Motor Tasks That Have Several Steps à this
has a lot to do with the way Alex’s
brain processes auditory information… Alex will appear to
comprehend all
of the directions… but his brain can actually process only 1 or 2
steps at
a time… and then his brain has to transform that auditory
information into
a motor response… so we break down whatever we want him to do into
smaller
steps for him to complete… & give short, precise directions…
& have
him repeat the directions and explain how he is going to complete
them... this one is hard because Alex really is
a smart kid and he really seems to be processing everything you are
saying… until he brings you toilet paper when you asked him for
paper
towel… & then he gets embarrassed & upset because he didn’t
‘get
it right’ the first time.
- Difficulty
With Coordinating Dressing Tasks à Alex
has put his clothing on backward,
twisted, & inside out… he sometimes forgets to take off pj’s
before putting
on his school clothes… this is a tough one because Alex is so
sensitive to
fabric and cannot tolerate tags… so we have mark the ‘back’ of his
clothing…
and make sure we check what he is wearing before we leave the house
or
send him off to school!
- Difficulty
Sequencing through Multiple Rules of a Task or Place à again
this has to do with the way Alex’s
brain processes information… he has trouble remembering the order
of
things… like knocking off shoes before you walk into the
house or
get in the car… opening the door wide and holding it for the person
behind
you to grab, etc… he’s able to memorize all the steps, just not
always in
the right order… so we have to remind him (quietly in public or he
gets
very embarrassed) when he’s got the order mixed up…
- Difficulty
Following Multi-Step Directions For Art Projects In School à
Alex has difficulty with anything that has many fine motor steps
(steps
completed by or with finger/hand/wrist movements)… and he cannot
concentrate on his environment when he is focusing on fine motor
activities, so he can miss part of the directions… whenever
possible we write
out the steps for him to read and check off as he completes them.
- Very
Difficult Time With Transition; Rigid With Schedules à a
transition is anytime anyone is moving
from one place or activity to another (going to the store, getting
ready
for bed) … chaos or traffic-jam transitions are noisy & busy
&
involve a lot of people…
transitions are very difficult for Alex… you really have to
think
‘toddler’ tolerance level with this one… Alex needs precise times
for
precise activities (when you get ready for bed first take your
pills, then
brush your teeth, then put your pj’s on, then go to the bathroom,
etc…) which
can be cumbersome… but once he knows the routine he never forgets
it… and
he takes a lot of pride in doing things independently… so we try to
remember that rules and routines are calming for Alex and create
routines
that are the same no matter where he is…
- Difficulty
With Changes in Routine or Schedules à any
change in a predicted routine is
upsetting to Alex… especially in new surroundings… but since
nothing is
ever exactly the same we’re constantly working with him on this
one…
especially with meal & activity times.
Alex will only want to eat lunch at exactly noon… when told
he
can’t play video games all day he wants to play video games for
exactly
one hour and then do something else for exactly one hour… he wants
consistency in an inconsistent world, and we’re helping him cope
with that
(baby steps) on a daily basis… we give him 10 minute ‘warnings’ for
ending
an activity or leaving a place… let him know exactly what we’re
going to
do or buy before we get out of the car at the mall or grocery
store… &
just try to make sure he is prepared before we do anything or go
anywhere!
Posture:
(Alex’s ability to keep himself
upright and balanced)
- Increased
Muscle Fatigue And Weakness à this has to do with the
effort Alex has
to exert to coordinate his large muscle groups (back, belly, leg,
arms)
into smooth, balanced movements… think of toddlers learning to crawl or
walk… first they have to figure out which part of their body to
move, and
then it becomes automatic… Alex isn’t quite to the automatic part
yet, so
we have to work him up
to certain levels of activity… when he’s tired he loses his balance
easily… and then his left foot turns in & drags… or when he’s
really
worn out his left eye will become ‘lazy’ & start to cross…
- Decreased
Endurance à
we constantly monitor Alex for fatigue by his body / balance
control…
especially with swimming… his muscles cramp easily & can
increase the
risk for injury… this is especially tough for Alex because he’s a
kid and
he wants to do everything kids do… his body doesn’t always let him
and he
gets very impatient with his limitations..
- Joint
Pain Experienced With Extended Sitting Or Sedentary Activities à Alex
experiences arthritis like pain in
his joints and he can also loose trunk balance/control if he is
sitting
for extended periods of time... his neurologist wants
him evaluated for rheumatoid
arthritis when he’s a bit older… so
we have a mini trampoline, therapy balls, and beanbag chairs &
rocking
chairs for him to use at home to increase his movement while
sitting… it
helps to compare his body and balance awareness to one of those
self-winding wrist watches… as long as there is intermittent
movement they
work fine, but if there is no movement they stop working…
- Difficulty
Using Playground Equipment Because Of Gravitational Insecurities à it
took a long time to get Alex
comfortable with balance playground equipment such as swings,
see-saws,
and teeter-totters… he’s better with swinging, but still
experiences a lot
of anxiety with all of them… he prefers to hang or climb, but since
he has
difficulty judging distances he doesn’t always realize how high he
has
climbed until he is stuck… and he still has trouble sensing injury,
so he
can bang his elbow or twist his ankle & not realize that he has
hurt
himself until after we’ve left the playground… he
still needs balancing wheels on his
bike, but we’re working on that one!
- Difficulty
Maintaining Balance When Eyes Are Closed à in
fact… he can’t do it at all… so…
he’ll never be able to pass a drunk driver test… other than that we
just
tell him to keep his eyes open…
- Quickly
Becomes Hypotonic à hypotonic
is low or floppy muscle tone…
when Alex becomes overwhelmed with too much noise or commotion, or
when he
gets tired, he becomes floppy like a rag doll… he just can’t seem
to keep
himself upright… he’ll try to hang or push on objects (or you)
because his
joints are seeking ‘heavy work input’… which is the sensation you
feel in
your joints when you hang from or lift up or push or pull heavy
objects…
it’s just his brain trying to re-boot, but his ability to maintain
personal safety while seeking this heavy input is reduced, so we
have to
monitor what he is doing at these times…
Fine Motor
Abilities: (Alex’s
ability to
complete tasks involving hand/wrist/finger movements)
- Difficulty
with buttons, snaps, and zippers on clothes à this
is why Alex is usually wearing
elastic waistbands & shirts without buttons… his neurologist
told us
that Alex’s sensation in his fingertips is reduced to the point of a
normal person’s sensation through latex gloves… he can zipper,
button,
& snap easy/larger zippers, buttons, & snaps like the ones
on
coats… but not on jeans… and of course he cannot tolerate the
thick,
scratchy seams of jeans anyway…
- Decreased
Ability To Use Utensils Correctly à when
Alex is eating in a quiet
environment he is able to use his utensils without too much
difficulty…
but in a noisy restaurant don’t expect him to be able to twirl his
spaghetti on to his fork… and when he is tired he sometimes forgets
which
hand to hold the fork and which to hold the knife… but again, he
insists
on being independent, so we make sure we give him smaller pieces of
meat
cut, and make sure the butter is soft enough for him to spread on
his
bread by himself
- Difficulty
With Activities That Require
Extended Cutting Or Gluing à this has to do with the
arthritis type
cramping and joint pain that Alex experiences with any activity
that
involves hand/wrist/finger movements… these activities can also
cause
trunk fatigue, so you know he’s had enough when he starts leaning
on his
elbows or bending over his work.
- Difficulty
Holding Pencil, Crayon or Utensil When Fatigued à
Alex’s fingers, hands, & wrists get tired very quickly, and
then he
has a lot of trouble holding onto things… you’ll notice that the
way he’s
holding his pencil or fork looks awkward, or he’ll keep dropping
it, or he
can’t press hard enough to make a mark or stab hard enough to pick
up his
food… so we make sure he has enough pencil grips for all of his
pens &
pencils, and let him scoop up his food or give him finger foods
when we
know he’s tired or had a long day.
- Difficulty
With Tying Shoes à
this
involves the decreased sensitivity
in his fingertips… which will eventually resolve itself
neurologically…
and we’ve had to choose which accomplishments are most important to
Alex
being an independent and productive kid… so his shoes are always
double
knotted for him to slip on and off with ease.
Visual
Motor Abilities: (Alex’s
hand/eye coordination)
- Difficulties
In Writing à
Alex
has to work very hard to write with
proper letter size, spacing, formation, and pressure… and doing so
for
extended periods of time can cause the ‘arthritis’ like pain in his
joints… so we reduce his writing time & make sure he has
writing
implements & ‘grips’ that reduce the stress on his hands,
wrists,
& fingers… and he has a computer to use for extended writing
assignments… you’ll also notice that he writes ‘down-hill’ and his
letters
will start out perfect & quickly deteriorate… part of the
battle with
the school system is getting them to test Alex’s intelligence, not
his
writing ability… but we’ll get there eventually.
- Hard
Time Copying Geometric Shapes à this
has to do with Alex’s ability to visually
process the size, shape, color
and orientation of an object and then reproduce that object
correctly… Alex
needs to physically touch or move an object in order for him to
create a correct
mental image of the object… even for
flat objects he needs to first look at them straight on, and then
tilt the
paper or his head to view them from all angles before he can
accurately
reproduce them... so we have always
provided him with 3-D models of geometric shapes (even molecular
formulas/diagrams) for him to physically rotate and invert first…
and from
then on he can visually manipulate them…
this particular difficulty is especially frustrating for
Alex because
he is so intelligent… but his
brain doesn’t always send the exact information he needs… so he’ll
recognize that there is an error, but he won’t be able to identify
specifically
what the error is, or he won’t be able to figure out how to resolve
it…
- Difficulty
Staying In The Lines With Coloring Or Tracing Activities à
much of this difficulty revolves around his difficulty with
finger/hand/wrist movement… but it also has to do with Alex’s
ability to
focus on certain visual information while ignoring other visual
information at the same time (think ‘Where’s Waldo’),
and his ability to recognize a picture
without all the details being present (like Dot-to-Dot)… part of
Alex’s
visual integration disability has to do with the information his
brain is
sending to move his eyes and focus… his eye movements aren’t always
smooth, so the visual information he gathers isn’t always accurate…
when
this happens you will see him turning his head to read instead of
following the sentence with his eyes… or he won’t be able to copy
or trace
objects because he keeps losing his place… or he won’t be able to
maintain
a border (stay within the lines) because to his eyes the border
never
stays in the same place.
- General
Dislike And Avoidance Of Drawing And Writing Tasks à
this is another tough one… again, Alex experiences the
arthritis-like pain
and cramping in his hand/wrist/fingers when he writes for extended
periods
of time… so we try to break up those activities into smaller
segments
& make sure that he is writing for enjoyment… he has pens that
light
up when you use them correctly (proper angle & pressure for
writing)
and other fun & interesting writing implements of all shapes
&
sizes… by making his writing fun we’ve managed to increase his
joint
tolerance and the amount of time he can write comfortably… but he
still
gets very impatient with his own limitations… so sometimes we
actually
have to tell him to take a break from writing or drawing to prevent
muscle
cramping and joint pain.
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