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Vincent and SPD

9/24/2013

14 Comments

 
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I’m not sure where to begin with this entry, so I guess I’ll just start at the beginning.

Many of you are aware that Vincent was practically deaf for the first two years of his life.  I had to fight long and hard to get him approved for the surgery that would finally allow him to hear the world around him clearly.

That surgery was completed the day after his 2nd birthday.

Since that time, he’s seen both occupational and speech therapists to help him “catch up” to the verbal / comprehension level of his peers.  Test after test has proven Vincent is intellectually at level (or above) for things like reading / math, but when it comes to actually speaking and following directions, he’s still lagging significantly behind other kids his age.


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Well, about a year ago, his case worker decided that he needed to be tested for Autism.  I immediately rebelled.  I’ve taught plenty of children on the spectrum.  Vincent doesn’t “fit” on the spectrum.  Plus, I knew that if he was tested by the district, they would be obliged to share those results with every public school in the area, and I absolutely refused to allow my not-yet-3 year old son to be labeled. 

They argued that they wouldn’t continue services without the test, so I showed them the door.  I was so angry.  I remember that final meeting clearly.  I told them in no uncertain terms that they could take their theories and shove them.  I would NEVER allow testing of my 2 ½ year old son for autism given they hadn’t even taken into consideration the 2 years he spent in a mostly soundless world.  I was so sure they wanted to slap a label on him and be done with it that I could’ve torn their heads off.

So I not-so-charitably told them to find the door and let it smack ‘em on the way out.  Children should never be so carelessly categorized.

I explained the situation to my mother and best friend (mom’s a kindergarten teacher and Mary has her Masters in psychology).  I asked if I was just being a blind parent.  Were they seeing something that I was just refusing to?

They assured me I wasn’t being blind and they, too, were surprised the district was pushing so hard for such testing.  


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Fast forward a few months.  I noticed that he was still having difficulties with eye-contact and comprehension.  Speech had gotten significantly better, but comprehension was still lagging.  I was consistently finding him off by himself as opposed to playing with his peers.

I admit, flags were going up, but I still didn’t believe Autism was the answer. 

As the months progressed, and signs of Vince being slightly “off” piled up, I began to have doubts about my read.  Was I too close to him to really be objective?  Was I allowing some sort of fear to inoculate myself against the prospect of Autism?  

I again brought the issues forth to Mary and my mother.  Both of them assured me – again- that I wasn’t ignoring anything and I wasn’t trying to convince myself that he was perfect.  However, both of them agreed there might be some underlying issue that none of us could put our fingers on.

So that brought us to his first day of preschool I’ve been excited about for the last two years.


Truth be told, the last two weeks have been terrible.  

The first day of school (a brief two hours), and his teacher pulled me aside to tell me he was hitting.

HITTING?!

I almost fell over.  Vincent doesn’t hit.  He’s never really had an issue with hitting in daycare.  Even when the other kids would bite him, he wouldn’t hit back.  So to hear that during his two hour stint in preschool he decided to hit someone?  I almost couldn’t believe it.

The following week was more of the same.  He was thrashing about, screaming, acting defiant, and refusing to participate in any activities. The principal called on the third day, and again, I was at a complete loss.

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After speaking with the principal (and the teacher - both of whom, by the way, are complete rock stars), I decided it would be best to come in to observe Vincent, myself.  I took the day off and just watched him.  Sure enough, everything they said was spot on.  He was defiant, aggressive, and he screamed at both his teacher and the aid.  I was dumbfounded.

The principal, his old daycare teacher, and myself had a bit of a pow-wow to discuss what was happening.  His old teacher was just as surprised as I was to hear about the extreme change in Vincent.  He was, after all, one of her favorites.  She’s pregnant, and she noted Vincent was always very careful with both her and the baby he knew was inside her.  He was friendly with the other children, and he never screamed or acted defiant.  

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Hearing this, I think, made the principal hopeful that Vince was just in the middle of transitioning to a new place.  As a result of this conversation, she agreed to give me two weeks to help him make the transition.  I agreed that, if at the end of the two weeks he was still a handful, we would make other arrangements.

Well, here we are two weeks later and Vincent is in a new school.

*Sigh*

This was a very difficult experience for John and I.  It was especially difficult for Vincent.  I still feel terrible that we put him through such stress.  I feel terrible that we put his teacher and classmates under such stress.  

However, I’m grateful to God that we endured it because without it, I don’t think we’d finally be on the right track with getting him the help he so desperately needs.

You see, in my quest to deal with Vincent’s sudden changes in behavior, I reached out to everyone and anyone for help.  In my search, I began getting suggestions for Autism testing again.  My friend suggested he was oppositional defiant.  My mom suggested Autism testing for Asperger’s.  

I still refused to entertain the notion because my experience with teaching Autistic children shouted at me “No.”

There was something else, and I couldn’t figure out what it was.  So I kept looking.  I kept asking.  I kept praying.


That’s when I ran into Cam’s post entitled “Mae’s Journey.”

Suddenly, the last two weeks of chaos and confusion began to come into crystalline focus.

PictureCam = Super Mom
You see, Cam did something incredibly brave.  This isn’t surprising given that she’s been known to tackle some pretty big issues.  However, this particular topic is different in that she publicly acknowledged that her precious little girl might not be “perfect” by society’s standards.  Of course she’s perfect in God’s eyes, because she is exactly as He wished her to be, but no parent likes to paint anything but the rosiest picture of their darling children.

I’m the same way.  I think most parents are.

Cam, however, took the incredibly brave step of noting the struggle she’s had trying to help Mae grow and learn.  She, too, heard talk of Autism.  However, she also heard talk of something called Sensory Processing Disorder or “SPD.”

Those three little letters jarred something within me.


PictureThis folder is almost 3 inches thick
I quickly grabbed his therapy notes off the shelf and combed through them.  Sure enough, I noted the various “SPD” notes littered throughout.  I remember asking his therapist what those letters meant.  She, at the time, explained them as activities they did or techniques she used (weighted vest, hand combing, etc).  I just accepted that the “SPD” was a code or something that they used to help keep track of the various exercises they did. 

So once I realized “SPD” actually stood for something, I reached out to his therapist.  We’re still friends via Facebook because she wanted to be able to keep up with Vincent even though he was no longer in her care.

I confronted her with the notes.

She admitted to me she had always been believed Vince to be a Sensory Seeker (a type of SPD).  She wasn’t legally able to tell me because I guess she’s not a psychologist.  Point is, she agreed to come over and observe him, herself, now that he was older.  

She came and observed, confirming she believed him to have SPD.  

The next few nights found me pouring through material online.  The more I read, the more Vincent’s behavior made sense.  I finally felt like my confusion was being answered.


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This might sound weird, but it’s that feeling you get when you try on “the dress” for your wedding, I guess.  Everyone who suggested something to “fit” Vince felt wrong.  Autism, Asperger’s, ADD, ADHD, ODD… none of them felt right.

As soon as I read up on SPD and compared my research to Vincent’s erratic behavior, all the pieces of the puzzle lined up and I began to see my baby in a new light.

I’m currently waiting to hear back from the child-psychologist on when we can start therapy for him, but in the meantime, I’ve been doing my best to research ways to help him cope with new environments.  Unsurprisingly, the various techniques I’ve learned via Pinterest and Google really have helped tremendously, even in such a short span of time.  This just highlights for me that I’m on the right track.

Thank God!  And thank you, Cam, for being such a brave mom to post such a personal struggle online.  Without that entry, I don’t think I would’ve been able to put the pieces together for my own son. 


Stuff I Found Helpful:

Free online seminars, webisodes, classes, etc.  GREAT library on SPD-specific information.
http://www.spdfoundation.net/elearn/


Great jumping off points for folks curious to know how Autism is related to SPD.
http://www.psychologytoday.com/blog/the-autism-advocate/201003/what-is-sensory-processing-disorder-and-how-is-it-related-autism

http://sensoryprocessingmadesimple.com/are-autism-and-sensory-processing-disorder-sensory-integration-dysfunction-the-same-thing/


Hugely helpful, this article is a blog entry by a mom with an SPD son who is very similar to Vincent.
http://www.averageparent.com/our-word/spd/


SUPER helpful because it's written by a woman who, herself, struggled throughout childhood with SPD and has learned to cope as an adult.  She, too, shares many similarities to Vincent.
http://aspiegrrl.wordpress.com/2011/12/14/what-is-it-like-to-have-a-sensory-processingintegration-disorder/


14 Comments
Cam link
9/25/2013 01:28:24 am

You are such an amazing Mom! And your post brought tears to my eyes! I've been meaning to email you for days! But I am so, so thankful that you're getting some answers and able to help him. There's a few really good sensory books that you may have come across. The Out of Sync Child has Fun and The Out of Sync Child are the two that everybody recommended to me when we first started looking at SPD! Oh I wish I could hug you!

And I can definitely relate to your initial reaction. When Mae was two a nurse suggested something was wrong with her along these lines after doing a blood test and I was furious. How could she know anything from my kid crying when she was jabbed with a needle? It took me a long year of thinking to start considering that there actually was something... and it's so humbling!

Reply
Shannon
9/25/2013 02:00:57 am

I don't know if this helps but sensory processing dysfunction/ disorder is part of the diagnostic criteria for ASDs. Every autistic person has SPD to some degree.

Reply
Gina
9/25/2013 03:49:12 am

Thanks. In the articles I linked to above, it is noted that while not always mutually exclusive, they aren't always indicative of of one another either. Vince fits that latter point. It is a very important distinction.

Reply
Shannon
9/25/2013 04:02:55 am

Ah, I didn't realize ASD was officially ruled out with a diagnosis of SPD.

Katherine link
9/25/2013 07:44:37 am

I know almost nothing about these things (not helpful, I know) but any idea why Vince seemed to have no problem in day care before this school and then such problems? I mean, even if he does have sensitivities, why was there no problem before?

Reply
Gina
9/25/2013 08:08:53 am

I knew nothing until a week ago! So no worries. Ha ha!

As for why there was "no problem" before, that's not entirely true. It was just never pronounced. We always knew he was slightly "off" but attributed it strictly to his immature comprehension on account of his hearing deficit. We just assumed he was super active (like his dad) and had trouble comprehending directives.

The reason he never acted out aggressively in daycare is because they gave him a constant stream of sensory input (hugging, hand-holding, kisses, etc). For things as simple as story time, they had him sitting in their laps so he could turn the page. They just thought he was super affectionate (which he is).

As a result, they gave him extra affection because, frankly, they enjoyed it as much as he did.

So because he was always getting an "adequate amount" of physical stimulation, he never acted out in an attempt to "make his own."

That's what happened at school. Being in a new environment, first of all, is stressful. Couple that with the fact that he's not getting nearly as much physical affection and boom - the poor kid becomes aggressive and agitated in an attempt to create it for himself.

So that, in essence, is why it never really manifested so strongly before. The tiny times it did, it was easily explained away by either situation or circumstance.

Reply
Katherine link
9/26/2013 08:46:01 am

I see. How do you know he just isn't just more demanding of more attention than most kids? Or is that all SPD is?

Gina
9/26/2013 10:50:54 am

It's not needing attention so much as physical stimulation. His brain is somewhat addicted to tactile expression and if he does not get a constant stream of input, his brain cannot properly process his place in his environment.

It's tough for me to explain given it's new to me and I'm not nearly well-enough educated, but from my understanding in reading the articles above, without a consistent tactile experience, sensory cravers do not understand themselves in relation to what they see / hear. Instead, they make sense of the world around them by touching everything.

Small example, but it's one that a lot of people can relate to. Doodling.

When you're on the phone with someone, or listening in class, etc, some people doodle. It's not that they're ignoring the person on the phone or the teacher in the middle of a lesson, it's just that they focus better when they are engaged in a tactile experience. Feeling the pencil, making loops with your wrist, and allowing extra energy to flow out onto the paper frees up your mind to focus on what you hear and helps you focus better.

Make sense?

It's not about attention. It might seem that way, because he's so young and tactile expressions, for him, amount to that which other caregivers have given to him. However, he just needs to learn alternate coping mechanisms (like doodling, using fidgets, or relying on quiet toe-tapping) to get the tactile experience he needs which will, in turn, help him focus better.

Oh gosh - does that make sense? I feel like I'm doing a terrible job of explaining things.

:(

Katherine link
9/27/2013 02:15:45 am

It does make sense, but, to me (and maybe that means absolutely nothing - lol), it also sounds totally and completely normal. I doodled a lot in school. I think lots of kids like having physical stimulation. Isn't that one of the key components to the entire montessori learning method? To put objects in kids hands and let them manipulate them? Isn't that one of the ways in which many people learn, through feeling, touching and actually doing things as opposed to merely listening or reading? I'm not saying you are wrong by any means. I completely believe you. I just don't understand why something that seems very normal to me would have a label, particularly one with the word "Disorder" in it.

Cam link
9/27/2013 05:27:18 am

Hi Katherine-

(not sure if this is going to come up in the right place, but hoping it is!)

It's basically a disorder because the brain isn't processing stimulation properly.

So for some kids (like one of my cousins) everything hurts. These kids generally find everything painful. They're the ones who's socks never feel right or who are bothered by a seam "feeling wrong" to the point of tears. And their brains never just start ignoring sensations, they just get overloaded to the point of hysterics.

Then there are kids who are it presents in as low energy (I will admit that I totally don't understand this one as much because I didn't pay as much attention to it because I knew it definitely didn't apply to us).

Then there are the sensory seekers. They're brains aren't processing sensations correctly. A lot of times like Mae, they aren't feeling pain correctly, or really anything very well (or at least their brains aren't processing it correctly). So they seek out strong sensory feelings (often hot food, bright lights, loud noises, fast movements, hard hugs and kisses) because they don't feel the lighter touches.

I think for a lot of parents if you have a sensory kid you have a feeling that something is off. The kid stands out as really, really different from their peers. I know when I started reading about sensory stuff it was like a light went on because it was like reading a description of Maggie. I'm not sure how well I'm describing it, but that was how we experienced it at least.

This site explains it way better than I can though! http://www.sensory-processing-disorder.com/

Katherine link
9/30/2013 08:35:16 am

Cam, Oh I see. That sounds like it can be downright dangerous. Teresa has, as her pediatrician puts it, a "daring personality" but after being bit by a chicken (which didn't even break the skin, btw), she wasn't about to stick her fingers back in. It sounds like what you are talking about would want to be bit just to feel something. I wonder if such kids like swimming considering, while the sensory input might be relatively mild, it also would be with their whole body? Is it hard for kids to adjust to SPD?

Cam link
9/30/2013 08:43:33 am

I'm not sure about other kids with different types of sensory disorders, but with Mae when she gets in the water she gets super over excited and screams (happily) which get us a ton of looks. And she'd be so over excited she'd keep biting my should hard, and trying to push off to go off on her own (and she can't touch anywhere in our pool). It's all kind of crazy! Every time she sees water, whether it's a raging river or a big fish tank, she sits down and starts taking off her shoes....

Gina
9/30/2013 09:21:22 am

With that water bit, you just explained Vincent. *Shakes head*

Katherine, it is kinda scary because it is like they do things just to get the stimulation of "feeling" something.

I dunno about Mae, but I've seen Vincent do things that would hurt normal folks (especially with his feet) just so he feels something.

I remember freaking out a few times to his therapist because he'd do that. I never understood it until reading up on SPD. Now when he does it, I go out of my way to give him other ways to cope with the lack of physical stimulation.

Cam link
10/2/2013 12:27:54 am

The feet thing totally reminds me of Mae too. One of the things she would do is throw cereal on the ground and stomp it every. single. day. because she loved how it felt under her feet... it drove me crazy until I began to understand why she was doing it and started looking into sensory ideas (and it actually has drastically decreased now).




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