[mommytoEli]

aka sensory processing disorder

read the list of signs mindy posted HERE:

Sensory Integration Disorder anyone???

there are way too many of us......i'm starting a club, let us know who you are, where you are in the dx and treatment, what's been helpful, etc. your child does not have to be from Guatemala to join.....just experiencing SI issues.




I'll start:
(feel free to add to or subtract from this list)

age of child at homecoming: 10 months
if adopted, country of birth: Guatemala
first signs of a problem: at 10 months, aversion to smooth foods, physically delayed, speech delayed, walked at 17.5 months, toe walked, could scratch through a onesie at the areas his diaper hit and DRAW blood!
age at dx: nearly 2 1/2
type of SI issues: oral and tactile
how does it present itself in your child: oral: aversion to smooth foods (will PUKE if they get even near his mouth), licks non-food items, like the cat, paper, the floor, tail pipe of the car...and he always does it at least twice, and excessive drooling even though he is done teething.

tactile: walks on toes, hates tags and whever the clothes, diapers, or socks first touch his body, has this thing about his feet - no one can see them, touch them, and he throws a fit if you try to take off his shoes, sometimes he sneaks and puts them back on to go to bed, he doesn't like to cuddle, or be naked (so he won't sit on the potty for sure...plus, it is smooth, which is a second strike!) , doesn't like to be changed, or dressed or undressed....basically, do not upset whatever state he is in, and something must be against his skin and feet at all times, or watch out! doesn't like to be dirty, and seems to enjoy pain- head banging, etc. today he took a key and said, "watch this" and jammed it into his hand. my mom screamed and said, "did that hurt." he just said, "yeah," and did it again! YIKES!
how long ago was it dx: just a month
what treatments are you doing: brushing, and playing games trying to get him to walk with his whole foot on different surfaces, stimulating his mouth and gums with textured and vibrating objects. visiting the pt 1x per month.
what has been the biggest resource for you: nothing so far, anyone have a good website where i can buy some sensory diet items?
what has helped the most: brushing. it does nothing for his walking, but he LOVES LOVES to be brushed and when he is done, he will curl up and cuddle with me, and he has stopped drooling all together.
what piece of advice would you pass on to other parents with SI kids? well, i'm a newbie, so none really, other than, if your kid likes to be brushed, get more than one, because they will swipe it when you are not looking

[CurlysGirly]

Well, I spoke with the OTs and SLP at the hospital today and they are mailing me a sensory profile to fill out for Devon. (Good times, I just did an updated one for Logan last week!) I need to get to bed and will fill out the form tomorrow but I wanted to join the club. Briefly put, we have MAJOR feeding issues over here and sensory seeking behavior. I don't think I would know so much about this stuff if it wasn't for Logan.

Do I get a membership card or anything????

[CurlysGirly]

I wanted to add this website that I got from my friend Ruthanne (fochtru) when we started the brushing protocol with Logan. The Parents' Place

[mommytoEli]

Originally Posted by CurlysGirly

Do I get a membership card or anything????

you get this cool superman S by your name....welcome aboard. not really a club i would have chosen to be a part of....but now that i'm here, i'm thankful for the support i've gotten from everyone that has btdt.

[CurlysGirly]

Thanks for my rockin' "S" . I'm a member of a lot of clubs that I didn't really want to be a part of but once in them, realized that I met some of the most AMAZING people. I'm a fate/Kharma believer.

This is by far my most favorite catalogue Special needs, sensory and therapy equipment from Abilitations - a School Specialty Company. for 2 reasons. #1 it has the best stuff & #2 Logan reads it while he is on the potty doing #2. Who knew that you could finally train a 5 year old to poop on the potty with a catalogue???? We've been poopy pants free for almost two weeks and I am walking on sunshine!

Keep all of your receipts for stuff that you buy as they are deductible medical expenses on your taxes, fyi.

[SKL]

Dude, I don't know if I have SPD or not, but that cow trying to lick me all the time freaks me out!! Am I the only one??

[Theslaws]

What a great idea! I work with kids with sensory issues and know that families can be such a great source of support for each other. Unless you live it its hard for most people to understand why your kids do what they do!

Another couple of resources:
Sensory Processing Disorder - SPD equipment, products, toys

Welcome to Super Duper Publications! (click on the balloon that says OT products)

Sensory Integration Products

Ill dig around at work for any other catalogs but these top 2 are the ones that came to mind right away.

[dac_cincy]

Bug has joined the club.

Home at 21.5 months
lenght home- 51 weeks (a year next weekend)
issue: biting (anything and everything)
diagnosed: about a week ago
manifestations: hard to tell if it was there from the beginning given that biting is a regular toddler behvior too, but he has been biting since beforehe came home. Recently it esculated to biting when mad, when happy, biting others, himself and the dogs.

OT says that biting the dogs, being very vocal (sounds and language), etc point to this issue.

Therapy: currently Bug carries a teething ring with him all the time- so he can bite on it, he gets foods that force him to chew- like pretzels, chewy snacks, etc.
She also offered that I could use a spray bottle to spray him in the face if he bites (I can not do that yet), I could put one drop of a bitter tasting oil in his mouth when he bites (I can't do that either).

I am working ohard on give=ing Bug words for his emotions and validating them.

the teething ring has helped and he asks for it when he does not have. I have to follow up with the OT in 2 weeks to see if we continue to see improvement- so far things are moving a positive direction.

Thankfully Bug is in daycare with my sister and she is totally 100% behind me inworking through these issue with Bug.

love to you,
Deb

[Saya]

Anabel was diagnosed with some of these issues soon after homecoming - but she's doing SOOOOO well!

age of child at homecoming: 8 months
length home: Almost 1 and a half years
if adopted, country of birth: Guatemala
first signs of a problem: Never, ever, ever, ever, ever, ever, ever, ever sitting still. Also EXTREMELY mouthy.
age at dx: At post-adoption visit from agency social-worker (on our request) at around 14 months, suggestion was made we get an EI eval regarding some of her “sensory seeking behaviors.” At hearing the term sensory seeking, we said “Aha!”
how does it present itself in your child: 1) Vestibular/Proprioceptive issues: Always looking for sensory/movement input, e.g. swings, climbing high, being thrown in the air, walking on her toes, spinning and falling down, NO fear at all. 2) Oral – ALWAYS wants something in her mouth – pretty orally fixated, even today. (This is also linked to some low-tone issues in her mouth. I’m not sure how these are connected.) Also some speech delays. 3) Obsession with cold things (eg likes to suck ice cubes) – aversion to hot things (all food must be room temperature or colder)
what treatments are you doing: OT twice a week, also speech therapy twice a week.
And a note: She is doing GREAT!! Both her SP and her OT have said that if she was evaluated now, she might not get services because of how well she’s doing!

[natalie_cook]

This will be a rather long post but I hope it helps.

Name of child: Caleb
Age of child at homecoming: 18 months
If adopted, country of birth: Guatemala
First signs of a problem: at 9 months during our first visit trip
Age at dx: 18 months
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"If your child has been labeled with words like difficult, picky, oversensitive, clumsy, or inattentive...there may be a new explanation and a new hope."
-The Out-of-Sync Child

I want to talk to you about Sensory Intergration Dysfunction (SID). Many child with SID are mis-diagnosed. Many children with SID are diagnosed with ADD, ADHA or even autisim.

What is Sensory Intergration Dysfunction?

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception).

For those with SID, sensory information is sensed normally, but perceived abnormally. This is not the same as blindness or deafness, because, unlike those disorders, sensory information is sensed by people with SID, but the information tends to be analyzed by the brain in an unusual way that may cause distress or confusion.

SID can be a disorder on its own, but it can also be a characteristic of other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette's Syndrome, multiple sclerosis, and speech delays, among many others.

Unlike many neurological problems that require validation by a licensed psychiatrist or physician, this condition is most often diagnosed by an occupational therapist. It is increasingly being diagnosed by developmental pediatricians, pediatric neurologists, and child psychologists.

While it has not yet been included in the American Psychiatric Association's Diagnostic and Statistical Manual as a discrete diagnosis, Regulatory-Sensory Processing Disorder is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and the Zero to Three’s Diagnostic Classification.

There is no known cure; however, there are many treatments available.
-Wikipedia

Sensory Integration Dysfunction Symptoms:


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: This is Caleb
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!)

SIGNS OF VESTIBULAR DYSFUNCTION:
Hypersensitive: Avoids playground and moving equipment, fearful of heights, dislikes being tipped upside down, often afraid of falling, walking on uneven surfaces, and avoids rapid, sudden or rotating movements.

Hyposensitive: This is Caleb
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.

SIGNS OF PROPRIOCEPTIVE DYSFUNCTION:
Under-responsive: This is Caleb
Constantly jumping, crashing, and stomping, loves to be squished and 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.

SIGNS OF AUDITORY DYSFUNCTION:
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: This is Caleb
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.

SIGNS OF ORAL DYSFUNCTION:
Hypersensitive: This is Caleb
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.

SIGNS OF VISUAL DYSFUNCTION: Caleb does not show either of these signs

Hypersensitive: Irritated by sunlight or bright lights, easily distracted by visual stimuli, avoids eye contact, may become overaroused 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, loses his place frequently when reading or copying from the blackboard.

SIGNS OF OLFACTORY DYSFUNCTION: Caleb does not show either of these signs

Hypersensitive: May object to orders, such as a ripe banana, perfumes or colognes, household or cooking smells.

Hyposensetive: Uses smell to interact with objects. Makes excessive use of smelling when introduced to objects, people, or places.

Nobody knows what cause SID, but research suggests several possibilites:

Genetic or hereditary predisposition
Prematuriaty
Birth trauma
Prenatal circumstances, such as, medications, stress, chemicals, or substance abuse
Postnatal circumstances, such as, lengthy hospital stay, excessive or insufficient sensory stimulation
Unknown reasons

What to do?

Call and make an appointment with your peditrician. Voice your concerns with him. Most of the time you do need a refferal from your child's peditrician for any therepy.

If your child is under the age of 3, check to see if Early Childhood Intervention is available to you. For those in the state of Texas, you can go HERE.

Once your child has reached the age of 3, the school district then takes over. Contact your school district and inquire about their services.
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A great catalog to get is:

Integrations

I hope this helps. You can also email me directly at kevin_m_cook@hotmail.com There is just so much more I can say. If you have questions feel free to e-mail me. Caleb has been in therapy for over a year now.

Natalie Cook
My Amazingly Blessed Life

[angelkisses0102]

Let's see here is what I gave the school district one year ago to describe SOME of DS's sensory 'fun.'

• Vision ~ Alexander has Infantile/Congenital Nystagmus. He ‘appears’ to have decent vision but has issues with night vision. He does not appear to see as well at night. He is also sensitive to bright (outdoor) lights.
• Sensory ~ Although he has not been diagnosed, we strongly believe he has Sensory Integration Dysfunction/Sensory Processing Disorder. We have come up with our own sensory diet at home to try to help him while we had been waiting to have him evaluated. Some examples of his struggles include:

Tactile Defensiveness- as an infant diaper changes were a nightmare, he hates circle time at school/needs his personal space much larger than typical, hates having his hair brushed, socks are an issue, shoes must be loose, his pajamas must be loose, his food choices are very limited and must be served at the perfect temperature or he will refuse to eat it…even once it has been corrected. And forget about tags…he HATES tags, on anything.
Hyposensitivity to touch – Mouths objects…still has a pacifier which he gnaws on, chews on his shirt constantly, and loves to touch soft things.
Hyposensitivity to Movement – in constant motion at times, loves to run, loves to be thrown in the air, he is a jumper and a climber with no fears, loves to swing, and loves to ride his tricycle into things.
Proprioceptive Sensory Seeking – seeks out jumping, bumping, and crashing activities, kicks his feet when sitting, loves to bang his toys, loves roughhousing, jumps on his mini trampoline and just about anything else, frequently hits, bumps, pushes, hugs too tightly other children, chews as noted above.

Auditory Defensiveness – Distressed/distracted by day to day sounds, hates public toilets, hates thunderstorms, tells people they are too loud, cries, runs away and covers his ears with loud unexpected sounds, and hates loud entertainment like the shows at Disney.

Oral Defensiveness – Picky, picky eater, he resists any new foods; he will stop eating a food if the packaging changes, hates brushing his teeth-gags on the toothpaste.
Hyposensitivity to Oral Input- He still drools constantly, as mentioned above he has a pacifier still and gnaws his shirt.
Hypersensitivity to Visual Input – Sensitive to bright lights (may be Nystagmus related.)
Social, Emotional, Play and Self-Regulation Dysfunction – prefers to play alone or in a small group, hates ANY change in routine, gets easily frustrated and still tantrums, loves repetitive play, he was an extremely fussy baby (may have been attachment related as well,) has a hard time self soothing, did not sleep through the night until age 30 months (he did have obstructive sleep apnea as well) and was up several (or more) times per night.

DS was adopted at 8 months old from Russia and we started seeing some issues immediately. However he was attachment challenged and we had to address that first. He has recently been formally diagnosed with SPD/SID even though we have been addressing his issues for over one year.

He is labeled as significantly developmentally delayed (almost globally) and has a severe speech impairment (not delay...huge difference). He also has feeding issues which we are finally addressing (he eats just enough variety to survive with a little help from pedisure.) He is in a SN pre-k since last fall and has BLOSSOMED. (This is language based and do tons of sensory activities.) He will continue in a SN K class next year with ST and OT there. We have finally gotten him into private OT with a sensory OT...just recently and we are already seeing great improvement. He will be evaluated by a private ST for his swallowing issues...both of these private OT's are paid for by insurance...FINALLY!

We have used or are using all of the following with DS...this is a partial list:
mini-tramp
jumping barefoot on tile floors
spinning him, swinging him, throwing him in the air
ball pits
riding his tricycle into things
massage and massage therapy
cranio-sacral therapy
adding DHA/Omega 3 to his diet
removing cow's milk from his diet
GFCF diet (couldn't work this and he didn't need it)
food allergy and intolence testing
brushing
rolling on an exercise ball
crab walking
swimming
water play
play doh and shaving cream
tents
swaddling
rough roughhousing

DS is now almost 5 and our main issue is impulsivity...but he recognizes this which is huge. He has improved so, so much in the past year...many of the issues mentioned above have either been greatly reduced or are no longer an issue. We did just start having issues with his sense of smell and him gagging until he throws up-due to smells. Oh joy!

Our biggest treatment 'successes' are bolded above...besides him now seeing a sensory OT!



Hang in, in gets better...trust me!

ETA~ I forgot to add that his sn pre-K is 6 hours per day, 5 days per week with 2 sessions of ST there. We see the OT twice per week for 30-60 minutes and have specific activities we do daily...so he is working very, very hard at overcoming this. I am so PROUD of him!

[Saya]

angelkisses, how has removing cow's milk helped? Was this an allergy issue, or something different?

[angelkisses0102]

Honestly I forget the exact why of why we did it...but I got the idea from either the sensorykids yahoo group or the adoptbiomed yahoo group. Also, under the biomed sction at A4everFamily.org - HOME is a book called the 'Gut Philosophy' or something like that. Diet/digestion issues can cause all sorts of issues in many kids.

I *think* I did it as a precursor to the GFCF diet...sorry I can't be more specific. He LOVES his vanilla flavored rice milk and knows immediately if I use cows milk in anything! But we noticed an immediate behavioral improvement when we took him off.

[Parisnroc]

I'm joining the club, not by choice, but God has entrusted me with our breautiful daughter and I will do all it takes to give her a happy, healthy life.

She has only been home a month. Today is her first birthday. She is severly delayed in every way. We attribute most of her delays to neglect, malnourishment and lack of stimulation. She was also diagnosed with SID/SPD. She won't grab anything with her hands and constantly looking around. Those are her major issues right now with SID/SPD. Whether anything else arrises is yet to be known. She doesn't sit up, crawl, and definetly not walking. When I brought her home she wouldn't eat baby food and is know eating stage two foods minimum three times a day. It's been hard to identify between her developmental delays and SID/SPD.

She is a very happy little girl and welcomes interaction from others. We are so blessed to have her.

[mommytoEli]

ok..how do you do this....i know it is in baby formula.lol....but that is it.


adding DHA/Omega 3 to his diet