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.
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• 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
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• 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…
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• 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
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• 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.
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• 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.
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• 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…
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•  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…
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• 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!
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• 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.
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• 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. 
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• 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…
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• 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.
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• 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!
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• 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…
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• 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.
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• 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…
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• 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…
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• 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..
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• 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…
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• 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!
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•  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…
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• 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…
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• 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
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• 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.
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• 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.
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• 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.
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• 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…
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• 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.
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• 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.