30 SPD Facts in 30 Days -- Fact #30

For today's fact, I asked a few fellow SPD-mom bloggers to submit their ideas for what they wish the world knew about Sensory Processing Disorder.  If you're another loved one of a child with SPD, please feel free to add your own ideas to the comments section -- I'd love to hear your thoughts have your input added to the conversation as we try to raise awareness for this disorder that affects our lives.  Enjoy!

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I wish the world could understand that it is not "just a behavior problem".  My son's actions and reactions often come from something real and it's called SPD! 
       ~Martianne     http://traininghappyhearts.blogspot.com/   http://sensationalhomeschooling.com/

The first thing that popped into my head for something that parents of SPD wish the world knew is I wish that people knew that my kids are really good kids and they try their hardest.  I also wish the world knew that kids do not come out of cookie cutters, they are each unique! 
        ~ Joyce Herrmann  http://texjoyce.blogspot.com/

I think it's so interesting that SPD is more prevalent in the gifted population. Every SPD mom I've talked to mentions that her child is really smart in one way or another. I often wondered what the connection is...I guess being more "sensitive" might go hand-in-hand with being more perceptive or intuitive. Here's more info from the SPD Foundation on this subject:http://vendovi.ctc.edu/exchweb/bin/redir.asp?URL=http://www.sinetwork.org/gifted.html     To me, this is a little ray of light....it's sort of like an "upside" to SPD.  
        ~Rebecca Whitlock,  http://www.raccoonschool.com/  http://www.healthygreenandfrugal.com/

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Thanks for joining me as I've presented some information on Sensory Processing Disorder.  November will bring me back to my regular blogging, so please stick around :)

30 SPD Facts in 30 Days -- Fact #29

In addition to Occupational Therapy (OT) and a home sensory diet, many other interventions exist to treat those with Sensory Processing Disorder, including auditory stimulation therapys, hippotherapy (using horses), nutritional therapy (involving elimination of certain foods and/or supplementation of enzymes, etc.), osteopathic manipulation (cranio sacral chiropractic adjustments) and integrated therapy approaches using a variety of techiniques simultaneous or in parallel.  For more details on these intervention options, check out the Sensory Nation website at http://www.sensorynation.com/interventions.html.
Our OT is amazing and using a variety of these interventions in Josiah's therapy. 
(1) Auditory Stimulation -- she maintains a library of modulated music CDs to play during therapy sessions and to check out for a home-based listening therapy program.  We invested in expensive specialized headphones for Josiah's listening therapy and have used a few different CDs to provide added auditory stimulation to Josiah's home sensory diet.  We'd probably have more success with this if we were more consistent in using it :(  This is a good reminder to get back into the swing of his "special music" on a regular basis (15+ minutes, twice a day as recommended). 
(2) Hippotherapy -- her OT office is actually on her home property where she keeps her small herd of horses, some of whom are working therapy horses.  On dozens of occasions, Josiah has gotten to ride a horse as part of his therapy.  Not only does it provide good vestibular and proprioceptive input, it also provides lessons in social skills (gentle touches on the horse, greeting them, etc.)  Many times, we've even combined auditory stimulation and hippotherapy by putting headphones on Josiah while he rides (our OT has a modified helmet that has space cut out for the specialized headphones for just this purpose!).
(3) Nutritional Therapy -- Josiah has been allergic to dairy and soy since birth (I even had to cut all traces of dairy from my own diet while I was nursing him), so it wasn't a huge stretch to go on the GFCF (gluten-free caesine-free) diet that is often recommended for autism-spectrum and sensory processing disorders.  So about a year and a half ago, I transitioned Josiah off of gluten.  After a couple months, I wasn't sure whether it was making much of a difference, so I challenged it by offering him gluten again for a few days.  On the first day of the challenge I didn't notice much change, so I thought we'd just go back to giving him gluten, but by the third day of the challenge, he was driving us all CRAZY!  Even without the caesine, the gluten-protein acts as a neurotoxin in Josiah's system, making his sensory issues even more extreme -- the improvement was so gradual when we first eliminated gluten that we weren't sure it was helping, but the challenge proved that it really was making a difference, so nearly two years later, Josiah is still GFCFSF (gluten, caesine, and soy free) and feeding him can be a challenge, especially outside the house (more on that in a future post).
(4) Osteopathic manipulations -- We've tried this through our family chiropractor, and sometimes it seems to have good results.  Come to think of it, we haven't taken Josiah to get adjusted since we had Malachi; perhaps a few adjustments would help reduce some of the "regression" we've seen since Malachi joined the family.  Note to self: call the chiropractor :)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #28

Sensory Diets:   Children with SPD need strategic activities sprinkled throughout the day to help maintain the optimum arousal level for good behavior and successful development.   Many sensory children will experience both extremes of energy (overstimulated or listless) throughout the day and have trouble maintaining the suitable arousal levels necessary to perform age-appropriate tasks.(1)  One of the most effective treatments for Sensory Processing Disorders is a sensory diet.(2)   A sensory diet is an activity plan designed for an individual child with SPD to help modulate his “engine” level.(1) 

For example, to calm an overstimulated child, you could wrap him in a heavy blanket, feed him crunchy foods or suck yogurt through a straw, have him roll or knead play-dough, or push a heavy box around the room.  To energize, have the child jump on a trampoline, spin in circles, take a shower or eat chewy foods.  Many children needs frequent sensory breaks during school for these kinds of sensory activities that help organize their bodies and let them succeed.

It is important to consult with your child's OT before introducing a new activity or developing a sensory diet for your child!

Read more at (1) Suite101: How to Support Kids with SPD: Sensory Diet Ideas to Keep Energy Levels Just Right http://www.suite101.com/content/how-to-support-kids-with-spd-a76995#ixzz13Cx2pE6D   and (2) http://www.sensory-processing-disorder.com/sensory-diet.html

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #27

The goal of Occupational Therapy [to treat Sensory Processing Disorder] is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner. Over time, the appropriate responses generalize to the environment beyond the clinic including home, school, and the larger community. Effective occupational therapy thus enables children with SPD to take part in the normal activities of childhood, such as playing with friends, enjoying school, eating, dressing, and sleeping.  (From SPD Foundation's website)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #26

Once children with Sensory Processing Disorder have been accurately diagnosed, they benefit from a treatment program of occupational therapy (OT) with a sensory integration (SI) approach.   Occupational therapy with a sensory integration approach typically takes place in a sensory-rich environment sometimes called the "OT gym." During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful. (From SPD Foundation's website)
 
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 #25

Early diagnosis improves family life. The stress on the families living with sensational children can be devastating. The understanding that comes with diagnosis helps parents avoid such common traps as assigning blame to each other for their child's behavior or disagreeing over discipline. A diagnosis also gives parents an explanation they can use to address the criticism and disapproval that is often directed at them as well as their child.

(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #24

Early diagnosis provides correct labeling for unusual behaviors. Because of their atypical behaviors, children with SPD often attract negative labels such as "aggressive," "withdrawn," "weird," "hyper," "out of it," and others from peers and adults. With early diagnosis, these behaviors get labeled early for what they really are–symptoms of an underlying neurological disorder. Undeserved and undesirable stereotyping, punishment, and other consequences are minimized or avoided.

(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

We were fortunate to have gotten a particularly early diagnosis (as early as 16 months), and while it has certainly helped some, it certainly doesn't avoid these issues.  That would require more awareness and understanding on the part of the other adults and peers in his life, and that has garnered only mixed success.  With many other neurological disorders, there are physical signs and symptoms or at least an understandable trigger (like with post-traumatic stress disorder, for example).  One of the great challenges with SPD (and Autism-spectrum disorders) is that the kids look, and in the case of SPD even sound, really normal, even advanced intellectually.  So even when you identify them as having SPD, the skeptics in the crowd will still believe it's just bad parenting.  Until SPD is more well-understood and widely recognized, the mislabeling will continue and so will the struggles that go with them, for the kids and their loved ones.
 
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #23

Early diagnosis can prevent secondary problems from developing. Children who perceive themselves as "failing" at activities that most children perform effortlessly are at risk for other problems such as social difficulties, academic under-achievement, acting-out behaviors, and/or low self-esteem and self-confidence. When children are diagnosed and treated at younger ages, they are more likely to escape this defeating cycle.  ( from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #22

Early diagnosis increases the chances of successful intervention. The immature brains of younger children are more "plastic," which enables them to change more easily. This makes intervention more effective for them. Older children still benefit but the benefits may take longer to achieve and may be based on cultivating coping skills rather than on modifying the brain, as early intervention is believed to do.

(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #21

Early diagnosis leads to early intervention. The sooner an accurate diagnosis is made, the sooner intervention can begin. Many children and their families suffer needlessly for years because of sensory issues that could have been addressed if a sound, professional evaluation had determined that Sensory Processing Disorder was present and treatment had begun sooner. 

(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #20

Diagnosis of Sensory Processing Disorder usually begins with screening, which is basically a professional search for red flags that indicate enough differences in development to warrant a more comprehensive assessment.  If differences exist that are sufficient to warrant further assessment, evaluation will follow.  In addition to standardized assessment, all comprehensive OT evaluations include detailed observations in a clinical setting to assess real-life movement and reactivity to stimulation. Most also include detailed interviews with parents and teachers.  (From SPD Foundation's website)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #19

The causes of SPD are among the subjects that researchers at Sensory Processing Disorder Foundation and their collaborators elsewhere have been studying. Preliminary research suggests that SPD is often inherited. If so, the causes of SPD are coded into the child's genetic material. Prenatal and birth complications have also been implicated, and environmental factors may be involved.
Of course, as with any developmental and/or behavioral disorder, the causes of SPD are likely to be the result of factors that are both genetic and environmental. Only with more research will it be possible to identify the role of each.   (From SPD Foundation's website)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #18

Most children with Sensory Processing Disorder (SPD) are just as intelligent as their peers. Many are intellectually gifted. Their brains are simply wired differently.  (From SPD Foundation's website)

I know most parents think their kid is exceptional in some way or another, so I really wish you could meet Josiah.  He really is exceptional!  He is SOOO articulate and curious, and he makes such amazing intellectual connections between things and figures things out so quickly and effortlessly.  His vocabulary rivals some middle schoolers' and he's not even six yet!  And if he has heard a story even one time (especially if it was read dramatically) he can recite nearly the entire thing back (give him two or three repititions of the same story and he can recite the whole thing complete with emotion!) 

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #17

Children with Sensory Processing Disorder often have problems with motor skills and other abilities needed for school success and childhood accomplishments. As a result, they often become socially isolated and suffer from low self-esteem and other social/emotional issues.

These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or "out of control." Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children's behavior by people who are unaware of the child's "hidden handicap."   (From SPD Foundation's website)

These are the issues that scare me!  We're working really hard to prevent them, and I know there is more we will need to do (and start doing now).  So far, he seems to be doing well with  most of this -- though he is not yet 6 and would only be in kindergarten this year. 

One of the things we're doing (that we had planned to do even before we found out about Josiah's sensory issues) is to homeschool him.  We did try putting him in preschool at age 4 because he is such an extrovert and loves to be around people -- but after several months, it just wasn't working for him.  He started coming home worried that the other kids didn't like him and started to resist going some of the time.  And we noticed that the "better" he was at school, the "worse" he was at home.  It just took too much of his energy to keep it together for those few hours and he would completely meltdown at home.  The staff at the preschool were amazing and tried really hard to be helpful, but school just isn't an environment that he can succeed in right now. 

In my terrified moments, I've considered putting him into kindergarten, but then I remember what a miserable nightmare it would be for him -- intellectually, he is ahead of the curve, but his motor skills (large motor for recess games and ball playing and small motor for things like cutting and especially writing and drawing) he's a little behind -- which means he would spend half his time bored and the other half frustrated, and that just sounds like a recipe for disaster, not to mention all the time he'd have to spend trying to sit still when his body really wants him to stay on the move.  Even if we could get him to a place where he'd manage all right at school, I think it would be at the expense of having a happy child at home, and we're just not willing to do that right now.  Perhaps at some point in the future we'll try school, but for now homeschooling is best for all of us. 

Our area has tons of homeschoolers, which means tons of support and lots of social opportunities, like Wednesday Park Play Day, where a large group of homeschooled families meet at a local park (a different one each week) to let the kids play.  He gets the benefit if building relationships with the same group of kids each week (a variety of age groups, too) and has a great time getting to run and climb while I get to chat with other homeschooling moms -- great setup!

I'm also trying to talk with him more about what his body is telling him and how he is (and/or can be) handling that.  Not only will this teach him more self-awareness and relevant coping skills, it will help remind us that he's dealing with sensory issues in those moments we forget and want to just treat him like a normal kid when he's driving us crazy!  Right now I'm working with our OT to write a few "social stories" that help him understand and deal with some of the key issues that are frustrating us all right now -- more on that in future posts I hope.

And, of course, I'm trying to educate the people around us so they will start to understand the challenges he faces.  I sometimes wish his special needs were more obvious, that he didn't look so normal to outside observers so that we would all face less scrutiny and judgment (can I at least plaster a huge bumper sticker on all his clothes?!)  I know that wouldn't solve everything either, and I'm grateful that he really is so adorable and articulate and fun (most of the time LOL).  And do lots of praying for grace and wisdom and joy -- and we're finding more and more of that all the time!

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #16

Another analogy for what it's like to live with Sensory Processing Disorder, from Michelle at http://www.sensory-processing-disorder.com/   She uses this description when she teaches seminars on SPD:

Imagine if:

  You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.

  You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.
  Your clothes felt like they were made of fiberglass.
  You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
  Every time you tried to write with your pencil, it broke because you pushed too hard.
  The different smells in this room made you utterly nauseous.
  The humming of the lights sounded louder than my voice.
  You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
  The lights are so bright you have to squint, then you get a pounding headache half way through the presentation
  Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
  You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
  People's whispers sounded like they were yelling.
  The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
  You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
  You had to pull the car over 3 times on the ride here because the motion makes you sick.

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #15

Stanley Greenspan, the author of "The Challenging Child " (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input. He describes it this way:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  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 #14

While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life. 

I think everybody probably has some sensory issues -- it's just that they are more pervasive in some than in others. For most of us, we have one or two senses that are bothersome some of the time -- for SPD kids like Josiah, all of his senses (or nearly all of them anyway) are out of whack nearly all the time. When it's less pervasive, it is simply less disruptive to your daily life.  It's more socially acceptable to be offended at smells than to be unable to sit still because your vestibular system is driving you crazy, or to make loud noises because you need more auditory input, or to crash into anything and everything so you can get some more input in your muslcles and joints, or to do all of the above at the same time nearly all day long.

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 #13

Sensory Processing Disorder can also affect our interoceptive senses, or our body’s ability to interpret and regulate normal functions like temperature, respiration, heart rate, arousal (sleep), mood, elimination, hunger and thirst.

This is definitely true for Josiah!  I can remember several times as a baby that he would have very high unexplained fevers -- he'd have no other symptoms aside from a fever of 104.  He was in a good mood, acting normally, even screening normally on blood and urine tests -- just running hot :)  As a toddler and preschooler, he would often wake up in the middle of the night drenched in sweat from his body cooling down at night and then overcompensating to heat himself back up -- by the time his body finally realized he was warm, he was already too hot and then would perspire like crazy to cool down, only to start the cycle over again.  We seem to have finally figured out just the right combination of pajamas, weighted blanket and room temp and havne't had much trouble with this lately.  That doesn't mean he never sweats at night (he does sometimes, though not as badly) nor does it mean he sleeps through the night (he doesn't, ever) but at least it isn't the overheated sweating that is waking him.

We have yet to figure out a good solution to his night waking.  We've tried dozens of things: letting him sleep in our bed, not letting him sleep in our bed, feeding him protein before bed, feeding him carbs before bed, not feeding him before bed, staying with him while he falls asleep, not staying with him while he falls asleep, lights on, lights off, lights dim, no blankets, heavy blankets, even melatonin.  While we have had some success with some of the strategies keeping him asleep longer before he wakes, he still does wake up every night.  He'll be six at the end of November and I can count on my hands the number of nights in his life that he slept completely through.

I've posted before about potty training issues so suffice it to say here that he has certainly struggled with that, too!  We're getting closer and closer all the time, but I still wouldn't consider him fully potty trained, and he's definitely not dry at night.  All in good time, I suppose.

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 #12

What are some signs of Sensory Processing Disorder?

Signs Of Visual  Dysfunction (with no physical vision problem):

Hypersensitive:  Irritated by sunlight or bright lights; easily distracted by visual stimuli; avoids eye contact; may become over aroused in brightly colored rooms.

Hyposensitive:  Difficulty controlling eye movements and tracking objects; mixes up similar letters; focuses on little details in a picture and misses the whole; looses his place frequently when reading or copying from the blackboard.

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

Like smell, Josiah's vision system seems to work well enough to also not need much special consideration on a daily basis.  We did have him evaluated by a vision specialist (not just an optometrist) and while he was a tad bit behind in a few areas, it wasn't worrisome or anything that required correction.  He does tend to become overwhelmed in rooms that are busy or cluttered, and he mixes up similar letters (though I think that is pretty age appropriate right now).  And if there is much clutter around, he can't seem to find anything he is looking for (especially if I'm the one who asked for it LOL) but aside from reducing clutter, there isn't much we need to do for him visually.  Yay for that!

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.

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.

30 SPD Facts in 30 Days -- Fact #5

“Sometimes the child [with SPD] will show characteristics of a dysfunction one day but not the next. For instance, the child with proprioceptive problems may trip over every bump in the pavement on Friday yet score every soccer goal on Saturday. Inconsistency is a hallmark of every neurological dysfunction. "   (from "The Out-Of-Sync Child "  by Carol Stock Kranowitz)

This characteristic is part of what makes SPD so confusing and disorienting for everyone involved.  Both the person with SPD and those around them may feel it is a (self)-discipline issue when they see that they are able to do something one day and not the next.  "See, that means he CAN do it, he just WON'T -- you just need to be more firm with him," people will say.  But no amount of firm discipline will create a neurological ability that just isn't there on those off days!

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 #4

One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold.  Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD.  (From SPD Foundation's website)

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 #3

There are actually 7 senses, not just five!  In addition to sight, sound, smell, taste, and touch, there is vestibular sensation (movement and balance) and proprioception (input from our muscles and joints).  Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses.  

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 #2

At least 1 in 20, and possibly as many as 1 in 6, children's daily lives are affected by sensory processing disorders.  (http://spdfoundation.net/about-sensory-processing-disorder.html)

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 #1

What is SPD anyway?  Here's what the SPD Foundation has to say:

Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.

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.