SPD Parents -- I need YOUR HELP for my 30th fact!

What I'd like to do with Fact #30 is a list of things parents of SPD kids wish the world knew -- so please help me out!  Send me an e-mail at azamora@whatcom.ctc.edu with the one (or two, no more than 3) things you wish the world knew about your child, your family, your parenting, or SPD in general and I'll compile them into a list for my post on October 30th.  Let me know whether you'd like your ideas to remain adonymous or be given credit -- and help spread the word!  Send a note to the other SPD parents you know and send them over :)  Accepting submissions until 8:00 pm PST on Monday Oct 25th.

30 SPD Facts in 30 Days -- Fact #10

What are some signs of Sensory Processing Disorder?

Signs Of Oral Input Dysfunction (taste and gag reflex):

Hypersensitive:  Picky eater with extreme food preferences and limited repertoire; may gag on textured food; difficulty with sucking, chewing, and swallowing; extremely fearful of the dentist; dislikes toothpaste and brushing teeth.

Hyposensitive:  May lick, taste or chew on inedible objects; loves intensely flavored foods; may drool excessively; frequently chews on pens, pencils, or shirt.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

This was our first, and most irrefutible, sign that Josiah had sensory issues.  He nursed exceptionally well from birth, but would gag on "solids" when we tried to feed them to him at 6 months.  At first, we weren't concerned -- lots of babies just aren't ready at 6 months, and besides, he didn't get his first tooth (which is often a good indicator of food readiness) until 10 months.  We tried every few weeks to offer food, even trying rice cereal that was more milk than cereal, but nothing worked.  By his first birthday, we started to wonder whether something was amiss, so we started looking into it more deeply. 

Our family doctor assured us that there wasn't any physiological reason that he couldn't eat and referred us to a neurodevelopmental specialist instead.  The waiting list was long, and our insurance refused to cover the evaluation, so at 14 months we got an evaluation by representatives from the state's "birth to 3" program.  Not surprisingly, he qualified for free services and we were immediately put on a wait list for individual therapy and a therapeutic playgroup.  By 16 months, we had finally started therapy and were beginning to learn about the sensory issues that were keeping our son from eating.

Over the next year and a half, we used tactile input to help desensitize his oral system (gag reflex) and spent a lot of time helping him tolerate the feel and texture of food in his mouth, then learn to chew it, and eventually coordinate chewing and swallowing instead of just pocketing food.  By the time he "graduated" from the program at age 3, he was successfully eating enough to sustain himself without continuing to nurse and we thought his sensory issues were resolved!  How little we knew -- over the next six months I would see failure to progress in several areas that indicated more pervasive sensory processing issues and eventually sought OT to understand and treat them.

Now, at nearly 6 years old, Josiah does fairly well with foods but there is still a clear challenge with oral input.  He is very sensitive to flavors and textures, even smells, so he is a very picky eater.  He's also a bit uncoordinated when it comes to eating, so he often bites his lip or tongue, tends to overstuff his mouth (so he can better feel what's in there), and chokes on liquids fairly frequently.  Add to that his dietary restrictions (gluten intolerant and dairy/soy allergic) and he's a rather tough kid to feed :)  But we manage well enough and even have some fun moments with food!  Stay tuned for a post in November about food ideas (both successes and failures!)

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

30 SPD Facts in 30 Days -- Fact #11

What are some signs of Sensory Processing Disorder?

Signs Of Olfactory (smells) Dysfunction:

Hypersensitive:   Bothered or nauseated by cooking, bathroom and/or perfume smells; may refuse to go places because of the way it smells; chooses foods based on smell; notices smells not normally noticed by others.

Hyposensitive:  May not notice unpleasant or noxious odors; smells everything when first introduced to it; may not be able to identify smells from scratch 'n sniff stickers.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

This is one of the systems that has the least challenging effects for Josiah.  I wouldn't say it works perfectly (he does tend to be on the oversensitive side and very frequently comments on how things smell, both good and bad) but it doesn't seem to get in his way terribly much.  He certainly chooses foods based on smell (we learned that the small of Fava flour baking in gluten-free breads was completely intolerable, and he would not only not eat the bread, he woudln't eat much at all while he was smelling it!).  He also notices and points out smells in our daily life that many others might not even notice.  Fortunately, it doesn't seem to hold him back much -- he doesn't get nauseated or refuse to go places based solely on smell.  We're grateful to have at least one system that doesn't require a ton of special consideration (beyond the menu) on a daily basis!

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

30 SPD Facts in 30 Days -- Fact #9

What are some signs of Sensory Processing Disorder?

Signs Of Auditory Dysfunction (not associated with a physical hearing problem):  

Hypersensitive:   Covers ears and startled by loud sounds; distracted by sounds not noticed by others; fearful of toilets flushing, hairdryers and/or vacuums; resists going to loud public places (even cafeteria at school).

Hyposensitive:   May not respond to verbal cues; loves loud music and making noise; may appear confused about where a sound is coming from; may say "what?" frequently.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html
Josiah's biggest challenge with his senses is modulation -- his brain can't seem to find the balance between being over and under sensitive to input -- and this system is no exception to that rule.  He goes back and forth between being disturbed by loud noises (he hides when the blender is on, hates automatically flushing toilets, and quickly gets overwhelmed in noisy environments) and seeking them out (he loves to have music and movies playing loudly, makes tons of his own (very loud) noises, and sometimes seems very confused about where a sound is coming from). 

From a parenting standpoint, this one is REALLY tough -- how do we know when he's not cooperating because he's struggling with auditory processing and when he's intentionally tuning us out (as kids often do)?  We still don't have very good answers for that -- we just try to make sure we get his full attention before we give him directions (especially when he seems to be having trouble cooperating) to somewhat rule out the SPD issue, but it's not foolproof, for us or for him! 

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

30 SPD Facts in 30 Days -- Fact #8

What are some signs of Sensory Processing Disorder?

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

Signs Of Proprioceptive Dysfunction:

Under-responsive:  Constantly jumping, crashing, and stomping; loves to be squished and give/get bear hugs; prefers tight clothing; loves rough-housing; and may be aggressive with other children.

Over-responsive: Difficulty understanding where body is in relation to other objects; appears clumsy; bumps into things often; moves in a stiff and/or uncoordinated way.

Difficulty Regulating Input:  Doesn't know how hard to push on an object; misjudges the weight of an object; breaks objects often and rips paper when erasing pencil marks.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

In our initial evaluation, the OT believed this was one of the only systems that was working well for Josiah so he tended to rely really heavily on it.  I'm not sure whether his difficulty with it just wasn't showing up then, or whether he just uses it as his primary coping mechanism to get some sensory input that makes sense, but he looks and acts under-responsive in this area.  He fits EVERY description above -- he tends to walk and run with heavy steps, is constantly jumping and climbing, he loves to bump, pound, and crash into anything, especially people, loves play-wrestling with daddy, especially when daddy squishes him, prefers all his clothes a bit too small (particularly his shoes), and does tend to get aggressive with people, though he's learning to use his words more than his body :) 

Proprioceptive input is our best bet for calming him (though it doesn't always work).  Especially after he's done something that activates his vestibular system, which really ramps him up, we try to follow up with some "heavy work" to recenter him a bit.  We try to end OT sessions with some climbing, hanging or deep pressure, and some days he leaves OT with a heavy pad to put on his lap in the car.  We give him big bear hugs or send him to jump on his trampoline when he's getting a little crazy, or we burrito wrap him (a game we play that is essentially like swaddling our 5-year old!)  He sleeps with a weighted blanket to help keep him calm through the night (though at nearly 6, he still doesn't sleep through the night).  No matter the reason, he clearly seeks out a ton of proprioceptive input and we do our best to find safe ways for him to meet that need!

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

30 SPD Facts in 30 Days -- Fact #7

What are some signs of Sensory Processing Disorder?

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

Signs Of Vestibular Dysfunction:

Hypersensitive:   Avoids playground and moving equipment; fearful of heights; dislikes being tipped upside down; often afraid of falling; has trouble walking on uneven surfaces; and avoids rapid, sudden or rotating movements.
 
Hyposensitive:  Craves any possible movement experience, especially fast or spinning; never seems to sit still; is a thrill seeker; shakes leg while sitting; loves being tossed in the air; never seems to get dizzy; full of excessive energy.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

This is one of the systems that gives Josiah the most trouble, at least as far as behaving in a socially acceptable manner is concerned.  He is hypersensitive in that movements feel larger to him than they really are, and hyposensitive in that he seeks them out and can't sit still for any length of time.  For example, when he falls at the playground, from just the first or second rung of a ladder and cries like he has broken his arm, we've learned to ask whether he's hurt or scared/startled -- usually he's startled because his body processed the fall as if it was ten feet rather than just two.  At the same time, he craves movement and really cannot sit still!  Our OT describes it as living life on a waterbed -- even when he is still, he feels like his body is still in motion, and that can be VERY disorienting.  He copes with that disorientation by keeping moving (controlling your movements is less disorienting than feeling like you're moving even when you're not).  Even when he is intensely interested in something (like a movie or Wii game), he doesn't sit still.  He'll watch an entire movie, but he'll be climbing on the couch, bouncing around, standing up/sitting down/standing up, etc. throughout the whole thing. 

Mealtimes are particularly challenging.  He has a hard time sitting still even for the length of a meal, especially if there is anything that challenges his senses with the food (taste, texture, smell).  Even at home this can be rough, trying to get him to have dinner with us as a family, or even just eat until he is full (rather than trying to run off and do something more stimulating) -- but taking him out to eat is even more difficult.  He is constantly crawling under the table, climbing on the seats and booth, wanting to be up walking around, and trying to contain him is VERY difficult, and the longer he is contained, the more disoriented he becomes from a sensory standpoint, and the harder and harder it is for him to "behave"  We try to be careful about where we take him (restaurants that are familiar, with foods that he likes the taste, smell and texture of) and when we take him (4:30 for dinner instead of 6:00, for example, and never on a busy Saturday night!)

This is also one of the big reasons we've chosen to homeschool.  He would never be able to sit still through a school day and is a very kinesthetic learner (he learns best while he is moving around).  Instead of reciting phonics from his desk in a classroom, at home he can recite phonics while bouncing on a trampoline, or run to a letter on the wall and shout what sound it makes.  Instead of just hearing or reading about ducks, he can pretend to be a duck and learn about how they live and what they eat while we waddle around the room :)


Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

30 SPD Facts in 30 Days -- Fact #6

What are some signs of Sensory Processing Disorder?

Tactile Sense: input from the skin receptors about touch, pressure, temperature, pain, and movement of the hairs on the skin.

Signs of Tactile Dysfunction:

 Hypersensitive:  Refuses or resists messy play; resists cuddling and light touch; dislikes kisses, rough clothes or seams in socks; resists baths, showers, or going to the beach.

Hyposensitive:  Doesn't realize hands or face are dirty; touches everything and anything constantly; may be self-abusive; plays rough with peers; doesn't seem to feel pain (may even enjoy it!)

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

Besides eating issues (more on that to come in Fact #10), tactile dysfunction was one of our first noticeable signs of Josiah's SPD.  He seems to have a lot of trouble with modulating input from this sense, vascillating between being extremely hypersensitive to being extremely hyposensitive.  He tended to shy away from strange goopy textures on his hands, hated bare feet on grass, and despised having his head and body touched lightly (but loved having deep-pressure touches).  One of the first sentences I remember him saying before he turned two was "No touching his head!"  At the same time, he also used touch as a primary means of exploring his world (for things that were non-goopy anyway) and needed to use a heavy touch to interpret the sensations (touching with just a fingertip was impossible for him). 

After a few years of therapy, he is doing MUCH better with his tactile issues.  He still likes to touch and handle everything he sees, even things he has seen many times before -- it is as if he is touching it for the first time every time.  We encouraged lots of goopy, messy play with his hands and lots of barefoot time, and now he LOVES (craves, even) touching goopy things and running around barefoot.  In fact, he seeks out opportunities to dig in the sand (even with his head, to feel the sand on his scalp -- he's a total sensory seeker!) and mash play-doh or gak.  He does still have trouble modulating, though, and when he gets suddenly overwhelmed with the goopy feeling and needs to get it off his hands immediately when he reaches that point.  He also still isn't very fond of massages unless we use really deep pressure, and hair cutting is a huge to-do (the feel of the hair clippings on his neck drive him bonkers!) but he adores wrestling with daddy (lots of deep pressure touch there) and doesn't respond so defensively at unexpected light touches (like being brushed against or bumped into by peers on the playground).  It is still a struggle for him at times, but he has learned to cope so well with his tactile senses that it isn't nearly as obvious anymore.

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.