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Tuesday, October 27, 2009

SPD And Me

Now that we're into the last week of October, I thought I'd stop procrastinating and write a few posts about Sensory Processing Disorder. I mean, y'all DID know that October is Sensory Processing Disorder Awareness month, RIGHT?

*gasp* You mean you DIDN'T?? Well, you do now. Although I suspect a few of you are totally scratching your heads at the moment, asking yourselves, "umm... what the heck IS sensory processing disorder?" Well, I happen to be a pretend expert, seeing as how I have it, as does my daughter, my nephew, my brother-in-law and quite possibly even my maternal grandma. Because there totally has to be a label for my grandma's special brand of wackiness. And please ignore the fact that I sport her same label. Because - despite evidence to the contrary - I am NOT wacky.


Anyways, last October I blogged quite a bit about sensory processing disorder because Our Little Tongginator is primarily an adoption blog and - surprise! - children who experience international adoption often struggle with sensory issues. That's because, as evidenced by my wacky family tree, SPD is genetic, running in families, but it also tends to appear in premature babies, children who experience stress in utero and children who were internationally adopted.


Because the nervous system develops throughout a mother's pregnancy, plus it continues to grow and form during the first year of life. And if a child doesn't receive adequate stimulation during those formative months, the nervous system doesn't always form as well as it could. Our Tongginator, whom we adopted at just under a year, was diagnosed with severe sensory delays at 13 months of age, then later received a diagnosis of sensory processing disorder.

So what did those sensory delays look like when we first arrived home?

Well, let me preface this by saying that sensory issues look different for EVERY person, although most people with SPD do struggle with tactile issues. Our little Tongginator is mostly a sensory-seeker, although she is sensory-avoidant in some ways. Taking my cues from Colleen, I thought I would list some of the issues we faced that directly related to the Tongginator's SPD:

low muscle tone
extreme oral defensiveness
strong desire or need to feel dizzy
delayed gross motor skills
delayed fine motor skills
extreme tactile defensiveness
self-stimulatory behaviors
high pain tolerance
under-responsive to sights and sounds, unless startled - and then over-responsive
strong desire to smell objects
lack of body awareness and body positioning

Umm... yeah... now y'all are thinking, 'that's a lot of nonsense words, TM. And I have no idea what they mean.' So let me describe them a bit, at least when it comes to our Tongginator.

Our Tongginator had (and still struggles a bit with) low muscle tone. The best way to describe it is to call her a "floppy" child. She had a significant head lag even at twelve months. Her arms and legs would just flop down if you raised them, then let go. Her core muscle strength was almost non-existent, causing her to truncate (sit with her hands braced against her feet to support her body) rather than to sit upright.

sitting versus truncating: RedFish and the Tongginator in Nanchang

Extreme oral defensiveness... I cannot even begin to tell you how this phrase causes horrific flashbacks. To quote an occupational therapist within our county's early intervention program, the Tongginator was "THE most orally defensive child I have ever seen." At 13 months of age, the Tongginator could not drink thin liquids, only formula that had been rice-flaked to death. She could not handle solid foods that didn't match the consistency of said Rice Flake Formula. And the Tongginator, being the Tongginator, would rather go on a Three Day Hunger Strike than drink formula that contained slightly fewer rice flakes as compared to the day before. It took six weeks and lots of therapy and grit to rid the Tongginator of rice flakes in her formula. The Tongginator also rejected anything placed in her mouth that was not Already Approved Tongginator Food... this included teethers, infant or toddler toothbrushes, medicine droppers, infant or toddler eating utensils (including chopsticks), straws and sippy cups, toys, and on and on. Interestingly enough, once we overcame the Tongginator's oral defensiveness, she began to crave strong flavors and textures in her mouth. The child is now obsessed with foods and chewing and all things oral, except for dentist visits, which continue to be a nightmare.

She has always shown a strong desire for or need to feel dizzy. As a baby, she often flung herself backwards while in our arms so that she could hang upside down, then feel a rush as we raised her up again. She spent hours in a doorway jumper, riding her rocking horse and spinning round and round on her sit-n-spin. I used to spend many an afternoon with her at the local playground, pushing her on the swings. The Tongginator also spent her first few months with us head banging both us and objects. And, when she could finally walk, she would spin around in circles with her arms spread wide for long, LONG periods of time. Now? She swings every morning before school. She asks for us to hang her upside down and to "squeeze my head, please, Momma." All of those things help her to concentrate.

playing the upside-down game with
Tonggu Daddy in the Tokyo Airport

Sensory kids often display delayed gross motor and fine motor skills. Now, it's difficult to know what is an institutional delay and what is sensory, but extreme delays are something to check out, regardless of the cause. The Tongginator did not roll over until 12 months of age, crawled at 15 months and walked at almost 19 months. She did not even begin to consider possibly attempting to self-feed until she was almost 14 months old. We still cope with motor planning issues, which means the Tongginator struggles to figure out how to PLAN movement. Pedaling? Confused her for a very long time. Swimming? Still working on that one. Her fine motor skills are also still delayed, mostly because she can't figure out how to exert enough force to do certain things, including buttons, zippers, opening up a child gate and such. She possesses excellent handwriting because it doesn't involve too much push/ pull effort, but she does often complain of hand pain because she presses her pencil too hard into the paper.

Our Tongginator also displayed extreme tactile defensiveness. She hated skin-to-skin contact, and not simply because of attachment issues. The Tongginator pretty much loathed anything touching her skin unless it was 100% cotton, including water, the wind, another person, carpet, wood floors, grass... well, you get the idea. Diaper changes, bath time and pretty much anytime was fairly horrific our first two months home. We ended up dressing her in long pants with long sleeves for several months, even though it was spring and summer in the Washington, DC area. We bought a second wipes warmer, so that we could gently heat lotion in it before applying it to her skin. It took several months of daily exposure to help the Tongginator overcome most of her tactile defensiveness. We still accommodate in some areas. For example, the only tights and panties she wears are from Hanna; we purchase seamless socks; she wears dresses most of the time because she hates feeling constricted around her waist; I could go on and on. Don't even get me started about the potty training. Oy vey. I once wrote a hysterical post entitled "The Ebb and Flow of Pee," only the husband wouldn't allow me to publish it.

Sniff. Sniff.

As for self-stimulatory behaviors? That's basically a nice way of saying that the Tongginator enjoyed hurting herself. She comforted herself by banging her head into walls or furniture... by picking at her skin (especially her nail cuticles)... and by pulling her own hair. Obviously all of this means that she also has a high tolerance for pain. And illness. Only once has my Tongginator ever clung to me while sick. Turns out she had strep throat, a double ear infection and a urinary tract infection all at once. Poor little gal.

In terms of sights and sounds, the Tongginator showed a strange mix of under-responsiveness and over-responsiveness to life happening around her. For over a year, I took the Tongginator to either the local playground, on a play date or to the tot lot inside our local mall every blessed day.


(Did y'all know that I absolutely loathe the mall?)

The Tongginator craved the busyness of people going to and fro. She loved action and wanted to be in the center of it all. She could not... function, for lack of a better word... if we hung out around the house for even one day. Our first two years home, I planned our days in much the same way that I once created lesson plans for my classes. However - and this is a big however - she did NOT like loud, repetitive noises such as smoke detectors, the microwave timer, a fire alarm and on and on. If those things occurred, she often returned to the hand flapping, rocking, self-stimulating behaviors that once were so prevalent. I can't tell you the number of times complete strangers (and one idiot nurse) asked me, "is your daughter autistic?" during our first year home.

The Tongginator loves to smell things. Not every child with sensory issues focuses on smells, but - for the Tongginator - this is THE number one issue. The Tongginator loves to smell everything, even stinky things. She finds comfort in smells. I remain convinced that the Tongginator fell in love with her cherished Doggy because Doggy arrived in a package containing a perfumed sachet.

with her beloved Doggy

She continues to struggle with body positioning and awareness. In other words, the girl walks into walls, falls off chairs and trips over her own two feet, just like her momma. She also took forever to learn how to dress herself and still can't quite manage some fine motor tasks, including (hurray!) child gates. She often drops things or slams things down too hard. She craves her special, sensory Tongginator sandwiches. She basically loses track of where her body is in space.

Then again, so does her momma.

There are many more sensory issues that the Tongginator struggles with, but those are the most memorable. SPD is a spectrum, ranging from mild to severe... while the Tongginator is now on the mild to moderate side of things, please understand, y'all, that our experiences during our first year home were some of the most challenging our social worker had ever seen. Add attachment issues, the failure to thrive crud and my depression to these sensory challenges... and... well... it was a lot. But it was ALL worth it.

Because the Tongginator is worth it.


bbmomof2boys said...

We all have our little issues don't we? I walk into walls all the time! Bang my arm on the door, hit my head, its never ending. My very good friend has a daughter who has sensory issues (though she doesn't recognize them!). When I read about some of the things you and TD went through I am amazed! It must have been so hard and so scary! I just can't imagine the thoughts that went racing through your heads. I feel so blessed with Little T! And so lucky that she's had minor issues. Not talking yet but honestly? That is NOTHING compared to what some adoptive parents go through!!

BTW, somehow I ended up on your elephant post. Wait, its salamander now, right? No..no..its morphed into a Frilled Shark. I think you need to find another one though. I'm not sure how you and TD are doing with this wait. We were LID May 30, 2006 and I think we would be waiting until sometime mid to late 2010 for our adoption. I hoping Ch*na will get their butts in gear soon for everyone's sake!


Dawn said...

"Because the Tongginator is worth it."

The best line of all!


osolomama said...

Oh, the little Tongginator little so dang cute mashing her little face into Doggy with her pom-pom hair accessories!

Very interesting post. Sim also loves to smell stuff. I've always interpreted it, though, as remarkable body awareness, which she seems to have. She had a dreadful allergic reaction to getting her ears pierced--so much so that the skin grew around the entire post and butterfly and the hospital had to retrieve the jewelry from inside the ear lobe. First thing she did when handed the things was sniff them!

Stefanie said...

Love this post, TM... thanks SO much for raising awareness about SPD. Amazing the different ways it manifests itself, our Isabelle struggles in many of the same areas, but also in many different areas. And the sniffing? Oh the sniffing! And cuticle picking, argh!
Once again, you are a huge blessing to all of us mommas :)

Aus said...

Hey TM - OK - confessions from a Dad....when we started the adoption process for the first time we took a number of classes, one of which was about SPD. I found myself thinking - well ain't this some stuff - what a bunch of nonsense.

Brianna was 6 months old when we got her - and even that young showed all the signs of SPD - including the 'flapping'. Braelyn might have been a poster child for the issue for a while - including EXTREME emotional response to harsh words - like the 'stop' or 'no' that parents yell right before the kid sticks their hand in a pot of hot soup or something. That would merit a 30 minute meltdown!

Today - hey - we've got it in the bag now - but until I got MY head around it wow...

Thanks for the words - everyone needs to be aware of the problem!

hugs - aus and co.

autumnesf said...

We share your pain with the oral defensiveness. Ugh!!!! The first solid thing we got into her mouth was one of those mints at Olive Garden. And we celebrated. Put complete trash in her body and we wanted to throw a party--as she was WELLLLLL over a year old!

We also deal with extreme anxious attachment. But she makes strides every year and Kindergarten is going well (said on the day of parent teacher conferences prior to the meeting - hope I don't eat my words).

Our other issue is loud noises. I wish I had video taped her reactions to show to the doctors. It was like she was having a siezure. She would try to claw her way into the floor while screaming. Scary.

These kids sure are teaching us a thing or two about life, arent they??

LaLa said...

Thanks for the post. I often wondered about Annslee...the noise issue was huge but she is past it now. When we met her the orphanage director chased us down as we were leaving with a a message from her foster mom "NaNa is allergic to new clothes" huh??? Yeah, we figured it out quickly.."she HATES tags" : )

With Coby..oh the head banging. I am still not sure if that is SPD or not as every child in his orphanage did it to self soothe and we broke him of it in a couple of weeks but it broke our hearts in the meantime. He does still like banging his head against things though so who knows. On the dizzy thing..he LOVES being upside down and will spin around until he falls down...so does Annslee...maybe lots of kids like that who knows?

Parenting is one big learning curve!

Briana's Mom said...

Wow - what a journey you and the Tongginator had to go through to get where you are now. I realize how lucky I got with Briana. I believe she had a wonderful foster mother. She was a little underweight when we first met her, but she was pretty much right on track when we brought her home.

The only thing on your list that resembles Briana is the body positioning and awareness. She is really a first class klutz. Then again, so is her mama. ;)

The Source said...

We'll be alright as long as your Tongginator does not grow up to marry MY Quatro. I cannot imagine what sort of grandkids we'd end up with...adorable to be sure, but sensory issues?? Oh my. :)

My boy's SPD stems from his prematurity. The twins were born at 29.5 weeks. He also has Auditory Processing issues. Makes life very interesting. We have dealth with most of what you mentioned over the past 12 years, and most of it has gotten SO much better with time and patience. There was a time when I wondered if he would ever learn to cope. The main thing we still struggle with? His handwriting. He could not write legibly if his life depended on it! He doesn't put enough pressure on the pencil and STILL (in the 6th grade) has to stop from time to time to figure out how to form a letter. Even the letters in his NAME! However, he makes straight A's and is very intelligent. Oddly, he's much better at writing in cursive than print. His OT finally told us to teach him to type. Other than the writing, and chewing on his arms sometimes so that it looks like he has hickeys, and the biting his nails down to nubs, he's pretty much grown out of his weirdness.

Well...mostly. :)

lighthousegal said...

Do you mind if I link back to you post on my blog?

The Tonginator's issues are pretty much the exact opposite of JB's issues - she is a sensory seeking child, she seeks out sounds, she does do the smelling thing, and the flapping when she is excited. Where your little one is "floppy" my was and still is to some extent hypertight. Even in sleep she often does not totally relax. Where yours craves the stimulation of shopping malls, etc, mine goes ballistic - she cannot regulate her responses. Where yours did not know her place is space, mine has only hit her head or extremities because she actually fell - she has always known exactly where she was in relation to things. Mine will climb ANYTHING and can open the tiniest things, but has no concept that I told her NOT to do things. I was so unaware of what SPD was, we are just now getting her the help she needed when she was little (JB is now 8). But things are improving and I see her show so much pride when she is able to overcome challeneges. Thanks for posting!

Alece said...

all of this feels like a foreign language to me. i feel overwhelmed just reading about it. God's grace has surely carried you (all) through.

and i'm still hoping to get to read "The Ebb and Flow of Pee" someday.

The Gang's Momma said...

Wow. I've got some serious lightbulbs going off here. I'm going to be back, to read and re-read this. I think we've got some minor SPD issues going on. I say minor because it's not negatively affecting her every day existence as long as we are aware of it. But with 7 folks in the house, staying on top of it 24/7 with variant factors of the other 6 folks is challenging. Thanks for sharing this. I'm looking forward to learning more. . .

Janet said...

Wow. Fascinating stuff. Is it possible to only have it SLIGHTLY? What I mean is, it is possible to have a mild form of it?

Annie said...

Thank you TM. That was a great post. I recognize many of those sensory issues with Lizzie and my 6year old (bio) son and me!! It can be SO hard some days but like you said so well, with help it does get better. I don't know that it ever goes away completely as I know I still struggle with it but I know that it does get better!! Thanks again, TM!

thegypsymama said...

Ok, this has to be the most fascinating post you have written. I think reading about SPD (and the infamous airline wedgie account) are what got me intrigued about your blog in the first place. I have follow up questions. Feel free to only answer those that you work for you, I don't mean to be prying. But I am fascinated by child development issues and wonder how some of these relate to my sons, particularly the youngest who seems very sensory seeking:

1 - How does feeling dizzy help a child? I have never really understood this one. Is this somehow related to never having had enough parental care/touch or is this individual specific irrespective of parenting?

2 - Is tactile defensiveness related to having experienced low tactile interactions as an infant/child through lack of parental care taking?

3 - Self-stimulatory behaviors - is this a means to compensating for not being held/loved on enough by a caretaker at an early age? (In Ukraine there were missionaries who used to come specifically to "hold" babies at orphanages - among the many benefits, I have wondered if this is one).

I continue to be amazed and awed at the amount of love you sank into your precious girl! Thanks for sharing!

happygeek said...

You know, I 've found with my kid with a delay, I appreciate the milestones SO much more. I am so proud of him and how hard he works. And we haven't had to overcome nearly as much as you all. Your buttons must be bursting some days when you see how far that girly has come.
Great information!!!

Myrnie said...

I'm not going to lie- I don't think I can grasp the magnitude of what you're saying. But I applaud you and the Tonginnator- you've come such a long way, and you are so blessed to have each other!

Michelle said...

Best SPD post yet!! I have learned so much from you, and now Colleen, too, on this topic. Thanks for giving specific examples. It is most helpful when talking to other parents and trying to figure out what is natural delays from living in an institution, what could be SPD, etc.

Thanks for continuing to shed light on this subject!!

blackbelt said...

Our Boo has some SPD also and auditory processing issues, too. For us, it wasn't that he was under-stimulated in an orphanage setting. He was in a loving (foster) home and I believe he developed his issues as a result of the trauma of being taken from his (foster) home and given to strangers (us.) The trauma prevented him from properly developing neurologically.

Have you done Neurological Reorganization?

anymommy said...

What a great post. We saw so many of these issues in both of our children in the months after their homecoming. Our daughter was never diagnosed, she was young and seemed to leave most of it behind, but we still struggle with what's an appropriate amount of time to be on a swing (I believe it's associated with the craving for dizziness). Our biggest tantrums these days are over the end of a swinging session!

Super Mommy said...

Thank you for this! What an enlightening post. Who exactly diagnoised the Tongginator? Your ped?

Sharie said...

I still find this facinating because I'm certain my daughter has some sensory issues which I was aware of but didn't realize they were "sensory" until I began reading your blog. We have just compensated and accomodated. She has to be CONSTANTLY stimulated and reading about going to the park or playground EVERY day...well I may not have gone every day, but I know I've gone more than I ever thought I would.
Pain tolerance? - I was beginning to think Amelia was Super Girl until I read about Tongginator (now I realize we have lots of Super Girls)
Amelia wants CONSTANT touch - which is not great because I do not, I need my space.

We recently got some hand-me-downs from some friends who adopted 2 daughters from China. The girls were both 5 or 6 at adoption...I was going through the clothes and couldn't figure out what size anything was. Then it clicked...someone had a sensory issue:)

It is amazing what our girls have gone through and continue to go through - and you are right...THEY ARE SO WORTH IT!!

mumma to many said...

I must admit I think I have it!
I am sure I have it!
And so do all three children to some extent.
I loved your honesty and that we are all teachers and we sometimes need to plan when all the Sh*t hits the fan!
Hugs Ruth in NZ

Hartley said...

Looks like I am late to the party on commenting, but I just wanted to add that children who are adopted from Foster Care often have Sensory Processing Disorder as well. My son sure does!

Happy Sensory Awareness Month!

Patty O. said...

Wow, you guys sure endured a lot those first couple of years, huh? Isn't it amazing how far you guys have all come?

This post was so interesting to me because it brought home the fact that, as you said, each kid's SPD is different. Danny has many similarities to T, but also some significant differences. He couldn't stand swinging until after at least a couple of months of therapy. Now, he actually loves it, but still dislikes getting dizzy, which is exactly how I am. He doesn't like to be put upside down either. He has some pretty significant vestibular problems, along with motor planning--big time! And the more I learn about SPD, the more convinced I am that I too have it.

3 Peanuts said...

Thank you for educating us. My oldest son, Will had some sensory integration issues and went to PT but really seems 100% fine now (he is 12). I don't see any of this with Kate so much. Except she hates tags and prefers dresses as opposed to anything on her legs but that is very minor:) I am glad God gave the T to you because you seem to now just how to handle it all:)

Thank you for the birthday wishes for Dave. DId you tell him you were chopping down a tree? LOL!

Half Gaelic, Half Garlic! said...

Great post....and thanks for being so open and honest with what you all have been through. I know it has been a long road, but one that was worth every painstaking step.

Because of you and others, I am now aware of what to look for early on....I will be bookmarking this one for sure. Hmmm....I say that a lot on your blog. I have a feeling I will be referencing a lot of your posts in the next year:)

anonadoptee said...

I'm pretty sure I have this, my official diagnosis is dyspraxia but this seems to fit better. (I'm not an international adoptee but I was severly neglected for the first two years of my life and institutionalised for the next four)

so much of what you describe is how I am. Do you know any good web sites for adults with it? because I deal with it the best I can but I've never had any proper support with it.

Also would you mind if I linked to this blog post?

I think this is a really important realisation for me. Thankyou.

Justin Narin said...

May God Bless both Tm and Tm Momma... we all have our little problems the trick is to overcome those. and i am sure as you mentioned that the little TM is worth more then all the sufferings :) you are a terrific mom.

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Marla said...

Great post TM! I'm so glad there is so much more awareness about SPD now than there used to be (or maybe I just didn't know where to look). No doubt this post and Colleen's too are going to be very helpful for parents and parents-to-be. My Jakob has lots of these same issues, as varying degrees of SPD are common in kids with Down syndrome.

Love all the pics of the little Tongginator!

Aunt LoLo said...

I love these posts...because I love the ideas that I get for the babies in my own life. Some of the behaviours you're describing are things I see in Lo Gung (sniffing EVERYTHING), BBJ (complete lack of awareness of her surroundings) and Siu Jeun (the love of the dizzy). Oh, and my niece (nearly 13 months and can't sit up, self feed...or do much of anything but sit still and grin at you.