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alexsmom
09-30-2015, 09:59 PM
My three year old really cant talk. Or get a diagnosis (the closest the neurologist has gotten is: he has idiosyncratic symptoms). No diagnosis = no insurance coverage. So to get treatment, itd be a lot more convenient if I had a label for him. We go to speech and occupational therapy twice a week (out of pocket). A few months ago, DS3 really didnt want to put his hand in a pile of shaving cream to draw in. *Hmmm, sensory issue?* The OT wondered.

Do we label DS with Sensory Disorder, and work on desensitizing him to putting his hand in shaving cream? Or does he just not like putting his hand in shaving cream because its sticky and it has a smell? (He cant tell us - I just am projecting my feelings towards shaving cream here.) He prefers having clean hands, will rinse them with water and sometimes soap - on his own.

Unlike my 9yr old, whose fingernails are usually black with grime. Whom I never thought had any disorders (other than being a boy doing annoying things that Muddylilly promises he will grow out of). And then I was watching him trying to use his knife to cut a chicken strip. He resists all instruction from us. I thought *Some therapy will fix that right up, and maybe it has something to do with how he cant draw worth a small pile of beans, either - maybe there is some diagnosis for him to explain it.* The following thought was like this: *Oh holy Notch, what am I thinking? Hes 9, hes a terrible artist because hes just not inclined that way, Im sure he will figure out this chicken cutting thing if he keeps working at it.*

It got me thinking, though. Are we over-labeling our kids just to explain their personalities? Are *problems* being found just so they can be treated? Is *Sensory Processing Disorder* really a disorder, or just a variant of fully functioning humans?

(Not denying that anyone or their kids have *more than usual* symptoms. If someone told me that about my 3yr old Id think they were idiots.)

HeatherS
09-30-2015, 11:03 PM
I've been thinking about this topic a lot lately. The preschool my son attended when he was 3 (he is now 5) told us that he had possible sensory issues, but they couldn't describe any coherent, ongoing, behaviors that we could take to a doctor or therapist (nor did my husband or I have any concerns based on his behavior at home). At pickup, they would say things like, "He seemed to be rubbing his feet on things a lot today" and give us meaningful looks, but there was never any pattern or coherent symptom set. We researched SPD online, and he just didn't seem to fit any of the symptom lists. We also suspected the preschool was getting kickbacks for referrals to a local occupational therapy center, which offered all the students "free evaluations" for sensory and developmental disorders. These were supposed to be optional, but when we refused to sign the permission slip to have an evaluation done during class time (we really resented the idea of our kid being handed over to a for-profit business with a vested interest in finding something to treat), the staff got all weird on us.

Our son does have some quirks; for example, he'll sometimes flip out crying in public restrooms because he hates flushing the very loud commercial toilets, so I have to flush for him after he leaves the stall. Five seems a little old for this, so now I'm guiltily thinking, maybe he really has had a sensory issue all along, and he would really benefit from working with an OT. Or maybe all kids have a few things like this that they're weird about, and he'll grow out of this in a few more months. I don't know. But I hate that these fears have been planted about behavior that could be a perfectly normal developmental stage.

Mariam
09-30-2015, 11:40 PM
For me the label helped identify how I could help DS. I was able to read up on the issues and understand how to help. (It also helped me realize that I also have issues, that I wasn't just the weird one.)

DS has SPD, being upset over the sound toilet flushing and not putting his hand it weird stuff are a couple of the issues we came across. (If those were the only ones. All his senses are affected. ) I am sure he could benefit working with an OT, but I have yet to find one.

Overall, I have found it to be positive. It gave me a starting point to ground how I decided to handle things. Do I follow everything I read, no. I pick and choose, based on what is best. But at least I have some idea. Also having insurance covering the treatment helps too.

CrazyMom
10-01-2015, 12:45 AM
I remember a period of time when Elle was 3-4 when we thought something might be seriously wrong. She had screaming night-terrors about insects....every night...for weeks. She'd wake up thrashing around insanely trying to "get them off her". Worst of all....they'd often hit just as she entered REM sleep....so we'd read a book and she'd doze...and just when we thought she was sleeping and we were in the clear....she's come roaring out of sleep like a Vietnam vet with PTSD. It was sort of terrifying. She'd scream like she was dying. The dog would freak out and leap on the bed trying to figure out what was attacking her...would whine and lick her like crazy...and she'd end up sobbing on the dog, clutching the dog, and falling right to sleep without ever really completely waking up. A more religious person might have considered Demon Possession. LOL. Seriously...it was SO WEIRD. You'd think the poor kid was coming off heroine. Very freaky!

I talked to my family doc who said we were doing the right thing not waking her....just trying to get her to go back to sleep. Dog seemed to help, so we let the dog do her thing. Within a few week....just as randomly as it had started....it quit! It's still sort of a mystery.

In her waking hours...the kid loved bugs. Was absolutely fascinated with them.

One night, about a year later, I got her to bed, read her almost to sleep....and she suddenly started to cry.

"what's wrong, kiddo?"
"there's a giant praying mantis in my curtain."
"No Honey, you're imaginging it. There's no praying mantis." I was thinking...Oh shit...here we go again. So I got hubby. Elle was hiding under the covers, crying quietly. Hubby tries...
"hey, Elle, what's the matter?"
"there's a giant praying mantis in my curtain." She's visibly shaking at this point, tears streaming down her face.
"Elle. There's nothing there. You closed your eyes and imagined it. You used to do this a lot." Hubby is trying to be very gentle.
She's sobbing now...and hubby goes to the kitchen to try to get her a drink...we're exchanging looks...very concerned.
So while he's gone...I'm rubbing her back and feel absolutely defeated..

.....and suddenly notice the HUGE fecking praying mantis...on her green curtain...inches from my face. Fecking thing is 3 inches long and it's waving its arms at me.

Oh shit.

I didn't scream. (miraculously)

"Elle. Elle look...you're right. I see him. Look...he's right here...we'll get him outside. You were right."

She pops out from the covers and jumps back.

"I TOLD YOU! I TOLD YOU!" She's hysterically screaming and FURIOUS. I've honestly never seen her this angry with us, since.

Hubby comes rushing in and looks at me...sees the giant bug...

"Oh shit!"

"Yep....parent of the year award....both of us."

She never let us forget this particular blunder.

Never had another bug terror that we know of....eventually raised hundreds of praying mantis's in her "lab". Was it her way of doing desensitization therapy? Who knows.

Don't mean to go on a tangent...I know the problems you guys are talking about are seriously challenging, and I don't want to give the impression that I'm making light of that...or understand something that I don't.

I just wanted to make the point....I think many kids have baffling behaviors sometimes....that can be very disturbing in the moment. Some continue to be issues, and some are self-limiting.

I hate that you guys have to deal with on-going issues. I know it sucks to not understand WHY...and to feel helpless.

Oksana
10-01-2015, 01:17 AM
... Are we over-labeling our kids just to explain their personalities? Are *problems* being found just so they can be treated? ...

--honest personal subjective opinion, not to be taken as an affront--

Yes and Yes

It comes from the perspective of someone who has a child with REAL medical diagnosis - cerebral palsy, confirmed by multiple EEG's. My DD had to be in multiple therapies since birth. Sometimes 6-7 times per week. 60 visits a year covered by health insurance. The other 300 paid out-of-pocket.

You have to have a real reason to subject your child (and your family budget, and yourself, and the siblings) to therapies. Something that affects their future. Cannot sit, cannot crawl, cannot walk, cannot talk past age 3, cannot see. This kind of magnitude.

Cannot touch shaving cream? So what? When is not touching icky sticky substances going to jeopardize his future? Oh, maybe, he will not be able to work as a hairstylist. Is afraid of loud flushes? He will either outgrow out of it, learn to cover his ears, or install a super quiet toilet in his house. What is the big deal? Really?

I have been sitting in the waiting rooms hours each week for the past 7.5 years seeing walking talking kids coming in and out of the therapists' offices and thinking to myself 'WHY?' Do parents just have too much money to spend? Do they want a quick professional fix for anything and everything? Kind of parental outsourcing gone extreme?

For myself, I had enough therapies to deal with. When one of my younger kids did not sit until past 9 months, I did nothing - turned out fine. When another had to have her hands washed multiple times during a meal, I did nothing - it stopped in a few months. You get my point. I am with 'do not cry 'wolf' unless you really see a wolf'.

muddylilly
10-01-2015, 01:30 AM
-just to explain their personalities-

AM, I need to sleep on this and then answer tomorrow. I don't want to offend anyone with my bleary eyed pseudo-rant, but I think you're on to something.

TFZ
10-01-2015, 08:05 AM
One end is what Oksana referred to as a REAL medical diagnosis. The other extreme is the munchausens by proxy mamas who just want attention (or money...). In the gray area is everything from helicopter parents home-diagnosing every undesirable trait in a perfectly normal child to families that are looking for some sort of answer to help a child with real challenges. It can be difficult to see what's really going on - from the outside and also from inside the family, up close to the child.

The issue, then, is not with the end of the spectrum who have real diagnoses or are seeking honest answers for a child who is unable to function. It's the parents looking for problems where there aren't any.

I think part of the problem is parental insecurity being exploited by the medical community. Doctors referring patients from one specialist to the next to subdue the parents even when there isn't a medical issue and others in the child's life can't see it - I had to fill out many forms for ADHD for kids who were either just bored or annoying. And/or parents who don't listen to honest doctors when they say that there isn't an issue, and continue to get opinion after opinion until they find a doctor who tells them what they want to hear. Of course not saying either of these is you, alexsmom!!!

Another part is the feeling of this generation of parents feeling that everything needs to be accounted for, explained. In previous generations, it was generally accepted that kids are born who they are. Now, parents are increasingly looking for outside events that explain a child's character. So yes, I believe part of the problem is trying to diagnose an undesirable personality trait.

On one hand, a diagnoses can be incredibly helpful to a child whose parents are working to help that child succeed. On the other hand, it can be a crutch that both parent and child can point to their whole lives to say, "It's not me, it's these three letters that excuse my behavior." Where is the line? I don't know.

skrink
10-01-2015, 09:48 AM
I've been thinking about this off and on since I read it last night, and trying to decide how to answer. Do I think we pathologize developmentally normal (but annoying) behaviors way too often? Yes. Why we do this is a whole topic in and of itself. On the other hand, do I think many people are in denial when their kids are exhibiting difficult, and difficult to explain, behaviors, and fail to seek treatment that could end suffering for their kids and make life easier for everyone? Yes. No one likes to think there is something wrong with their kids, especially when it isn't obvious or easily diagnosed.

My dd was dx'd with SPD as a youngster. She would NEVER have willingly touched shaving cream. Or finger paint. Or mud. That alone wasn't an issue. Like Oksana said, so what if a kid doesn't like messy play? But with everything else, it completed a picture for us. Sounds, smells, tastes, and textures all would send her over the edge. Loud noises would make freak, and she would lash out, often hurting herself and anyone around her. Smells/tastes and food textures would make her gag and sometimes vomit. Clothing tags and seams would drive her to distraction and make her cry and scream until we figured out what was wrong. We've since learned that SPD-like issues are common with ASD. And here we are.

Dx'ing psych problems is so tricky. You have to look at the big picture. Is a certain behavior part of a pattern of behaviors, or does it stand alone? How much does it interfere with everyday living? Friendships? Academics? Jumping in too quickly is a bad idea, but then again, failing to recognize true concerns is, too.

pdpele
10-01-2015, 10:37 AM
Deleted post

pdpele
10-01-2015, 10:41 AM
Ah, Skrink said it so much better, and more calmly. I just read it. So, "What Skrink said."

skrink
10-01-2015, 10:57 AM
:) Yeah, I had a gut punch reaction at first, too. I hate it when invisible disabilities are dismissed. There are lots of health conditions that aren't obvious to the casual observer. Same with certain developmental and psych conditions. We all approach these things through the filter of our own experiences, though, and I can see where everyone is coming from. It's rough emotional territory.

atomicgirl
10-01-2015, 11:15 AM
What Skrink said.

Also:

I have a child with REAL medical diagnoses, as well as a set of challenges that might fall under the "annoying behaviors" category if taken on their own. Because of the first, people understand the second is due to neurological issues. Therefore, I'm insulated from a lot of the criticism, and suggestions of possible "Munchausen by Proxy", that get heaped on other moms and dads (A lot of, not all. It's been said about me, and at one point, early in the diagnostic circus, I even saw a professional so I could be clear on my own mental functioning. It's that bad sometimes. It makes parents question their own sanity.). Please remember that REAL, but invisible disabilities are far more prevalent than the relatively rare mental disorder of MbP, and the vast majority of parents who seek help are sincere and afraid and looking for answers, not attention. Helping a child with an invisible disability can be very isolating and painful for even the best parents.

Also keep in mind, that for many of these things (AS, SPD, anxiety disorders, etc.) early intervention can be life changing. It can be the difference between school success and failure. It can be a process that paves the way for healthy self esteem, friendships, good study skills, and greatly improved interpersonal skills, all of which make them less likely to fall into the substance abuse, promiscuity, and suicide attempts that plague teenagers with invisible disabilities, especially if they are also cognitively gifted. Time spent hand-wringing and second guessing instincts is time wasted and potential wasted. Erring on the side of caution, an seeking evaluations is often the responsible thing to do even if the need isn't glaring.

muddylilly
10-01-2015, 12:05 PM
Still pretty sure I won't be able to really say what I think without exclamations of my insensitivity to nuance and spectrum and semantics. And maybe we should take this "outside" to the debate group....I don't know.

I think our world has really changed so much in the the past 50 years.....from chemicals in and on everything we eat and come into contact with having effects on the human body and mind that we don't understand, to technology causing changes neurologically that we don't know enough about yet. From social structures that have changed in ways that have definite effects on children, to the rate at which a kids growth, socially, is at both times retarded and accelerated (there are a heck of a lot of kids that have an adolescence of coddling and endless recreation, that are then are kicked out of the nest unprepared to act like an adult with real responsibility, and consequences.....but that's another discussion).

My point is that there has always been change and progress in human history, but not at the speed we have now (post WWII forward, actually electricity in homes forward). So yes, there is a distinct possibility that there is a flood of very valid........I don't even know what to call it without offending. So I wonder if, in some ways, we are not trying to reinvent a very old wheel......parenting, in a very weird world. There are obvious, and many, new factors that muddy the picture. And here is where the nuance, and spectrum, and semantics, and everyone's individual situation come into play.

btw: AM, not that you asked, but give your boy a knife and keep your hand off of it!! Eat a weeks worth of meals that need "cutting". Suck it up, and he'll get better at cutting his food. He's just fine :)

Oksana
10-01-2015, 12:16 PM
Hmm.. but what about our generation? I think most of us here grew up before the proliferation of 'invisible disabilities' - sensory processing, overexcitability, anxiety, add etc etc. How did we manage? Does anyone regret not going through therapies in their childhood?

I don't. I have plenty of quirks that I don't really mind, they kind of define me. I hate loud noises. Have not been in a movie theater in 10 years because it is too loud for me. I am terrified of snakes, would not submerge my head under water, my heart rate goes up after 2 hours of being in a loud crowded place. I do not mind them, learn to adapt and adjust. But if I were born now, there would be sensory therapy, desensitization etc etc available. Hmm?

Riceball_Mommy
10-01-2015, 12:29 PM
I have horrible anxiety that was made worse by my family trying to push me through it, or just shame me out of it. I also had trouble reading and experienced a good bit of shame in trying to get to read too. I think maybe I didn't need therapy (maybe I did though) but I at least needed understanding. Sometimes I think that label really helps people outside the situation understand. I say my 10 year old isn't reading on her own yet and I get judgement. I lie to my family and say I got a diagnosis she has dyslexia and all of sudden everyone understands that she's not reading and these things take time. I haven't gotten an official diagnosis because it's expensive and insurance won't cover testing. I suspect dyslexia so I've found different ways to teach based off that, and tried different programs specifically designed for that. Even suspecting a label might fit has allowed me to help her more.
She also has anxiety, that's not officially diagnosed either, but I have it and I see her reacting the same way I do/did. I'm trying to help her as best as I can now without an official diagnosis now, but might go for one later. I'm giving her what I never had, I'm giving her understanding. I'm not pushing her as far as I was pushed as fast. I push a little because sometimes a little push leads to progress.
Anyway, I think labels can be a good thing, they can give you a direction to look in for help. They can give you a better idea of how to help. They can also grant you understanding from family or people around you. They can also help you find other kids and parents going through something similar. Like all labels they can be a great tool or a great hindrance it's just how you use it.

skrink
10-01-2015, 12:38 PM
I grew up part of the up-by-your-own-bootstraps generation. I was also an anxious, depressed kid. But I had good grades, was polite, never got into trouble, wasn't in a wheelchair or physically challenged in any way, so when I tried to tell someone something was really wrong all I got in return was eyerolls and the big brushoff. I attempted suicide twice by the time I was 15, and the 2nd time I very nearly succeeded. Maybe therapy or at least someone taking me seriously would have been a good idea, hmm?

It's fine to have quirks and things that are harder for you, but when they get in the way of having the kind of life you want for yourself then maybe they are more than just quirks, and maybe defining yourself by them isn't really the way to go.

pdpele
10-01-2015, 12:57 PM
Oksana - Fine there's a group of things we'd probably be better off just accepting and moving on from - calling them 'quirks' or 'eccentric' or what-have-you and not making it a disorder. But there's plenty of sensory processing / add / anxiety that is disabling. Are you trying really hard not to get that? So as always, the devil is in the details, the wisdom is in knowing the difference, pick your favorite cliche.

Muddylilly - there's nothing you said that I'd take offense at. I think you are trying to point out the problems with labels when they are overused or not helpful. And when more free time, exercise, and plain old common sense tolerance to let kids just grow up to be what they're going to be would do way more good. That's fine. But the rest of your post shows you know that's not all that's going on...

If we want to start a what-the-heck is going on thread - how about asking why there is more of such issues now than when we grew up. Sure, better labels, better diagnosis, available therapies, etc. But also, just more. WTF? I wish there was a bigger/better conversation about that. I don't know much, but there is plenty of evidence to suggest that environmental pollution is playing a role.

Mariam
10-01-2015, 01:01 PM
but I at least needed understanding. Sometimes I think that label really helps people outside the situation understand.


This is it right here. Maybe someone needs therapy, maybe not, but everyone needs understanding, no matter how we ended up how we are.

Oksana
10-01-2015, 01:12 PM
Oksana - ...Are you trying really hard not to get that? ....

I do not think this phrase is a proper way to handle a discussion.

Skrink's and Riceball Mommy's posts do help to promote understanding, being riled-up and offensive does not.

TFZ
10-01-2015, 01:28 PM
I didn't mean to cause any offense. I don't think anyone means to cause offense to anyone in this discussion. We aren't discussing each other's children. I was simply stating that there is one end of the spectrum here where there is nothing really wrong, yet parents are seeking a diagnoses for some reason - attention, SS benefits, or an excuse for being annoying. And the system is enabling it.

I get it. Your diagnoses is real. Many children have invisible challenges, and it sucks that they and you have to out up with judgement from people everyday. However, doesn't it also suck that there are other parents out there looking to benefit from the system? If you were in PS you'd be fighting tooth and nail to get the services you need for your child - some of you have. At the same time another parent thinks that's not fair and seeks a 504 (or whatever it's called in your state) for their kid. They want "special treatment" too! Because for some people (the few at one extreme) it's not about getting what your child really needs. It's about getting as much as someone else. Don't doubt that this is happening.

crazyme
10-01-2015, 01:40 PM
We struggle with the lighter end of disabilities and labels for my youngest. He has just the enough quirks combined with just enough learning issues that we always wonder if there is something physically "wrong." Yet, at the same time, we don't want to stress him out or give him an excuse for something that is hard.

So this thread has made me think.

I think part of the issue is that the study of the brain, its development, and the nervous system has grown by leaps and bounds over the last two decades. We are learning so much about how we work, but are far from having the complete picture yet. So now we understand that there is an autism spectrum, but what does that mean? We are researching nervous system disorders more indepth, but can't pinpoint the culprits. Add in an extremely connected world (hello WebMD and social blogs), and you have a perfect storm.

I'm grateful for the knowledge we have access to, but navigating it and staying sane is a nightmare sometimes.

alexsmom
10-01-2015, 03:07 PM
Here is another example of what Im wondering about:
Today, at the therapists office, the prior client, a high-intensity boy, came running out of the OT room squealing. DS3 covered his ears and retreated to the safety of the seat next to me. Our OT noticed this, suggested we do some Auditory work.
From her point of view, maybe the covering hands over ears was a symptom of more *sensory issues*. Maybe its the combined no-messy and no shoes and no squeals that make it a concern for her.

From my point of view, it was just an incident where a kid was making an aggravating noise. If you cant talk, covering your ears is a reasonable way to communicate that its too loud. Maybe my son is *shy*, maybe hes just used to being approached in a lower-intensity way.
(We do OT for fine motor work, like pincer grasp and eye-hand coordination - not so much sensory issues.)

I do think that a lot of our personal *quirks* would be diagnosed as a disorder. There are some smells that make me gag - fish or overcooked steak/liver at the table, many cleaning supplies.... is there really a need to fix every part of us that makes us different?

Maybe in another generation, they will be treating introversion. Because, you know, humans are social animals, and if we arent constantly wanting the company of other people, we must be anti-social. Thats just the direction Im feeling that the *treat everything as a disorder* mentality is going.

Free Thinker
10-01-2015, 03:41 PM
I think we do have too many labels- but in order for a child to receive any help, he or she has to be labeled. If you have a child who may need help with a few issues, in order to get any help you have to get the label diagnosis. It's not the same as child who has more severe disabilities, but if the label is not there, the help is not there either. I feel like it's been a combination of finding ways to help certain kids and the constant testing of the school environment that has fostered the labeling- but no matter what's caused it, that's the way it is. I don't have any kids with severe issues, but I do have one in speech, and another one that has always had sensory issues (loud noises, clothing, food, never diagnosed w/ anything). If I can remedy it, I don't want it labeled. If I can't, and need help, then it has to be labeled. What I also do not think is fair is that there has to be a set discrepancy in order for a diagnosis to be there, and the help to be available. I have a friend whose daughter is slower in some school work, but the school will not lessen the amount she has to do unless it's diagnosed. Kiddo is smart, just needs less work- teachers can't do anything w/o an IEP, even when it's clear she's struggling and spending hours doing homework and never getting recess b/c she's not done w/ the worksheets. Same for speech, I have one that's in speech, we had to go thru a lot of testing and then do an IEP. The one of mine w/ sensory issues has them only mildly, but they do affect what she does! She didn't eat solids unti 10 months and still struggled w/ a bad gag reflex issue for years (still does). I was asked if I wanted her evaluated so we could do OT. I don't know why I have to have the label when all I need is the therapy- I do not want a label, and I ended up just going with teh flow and never getting any professional help. When I was a kid, kids who had trouble just went to speech class when it was okayed by their parents. Now, we have to have certain parameters met, goals stated and graded, progress being shown, ect. Teacher's can't help each child or treat any child differently WITHOUT the IEP. That also makes it hard for parents to know what is normal and what needs help, when so many kids are diagnosed with various labels. There is such a wide variety of what is 'normal' that kids on that lower end of normal get diagnosed as something wrong w/ them so they can keep up w/ the middle or higher kids. When we judge success as a series of accomplishments that need to be achieved by a certain timeframe, then lots of kids are going to fail, and need 'help' to make that accomplishment. I know some kids do need a lot more help than others, but by making so many artificial rules, we have made a society that needs the labels in order to make it all even for everyone. I love that we are learning more, and I think finding ways to reach each type of learner is very important, but I think we also need to redefine success, and make a world that is more open to all types of people and respects our different abilites. How many people as adults do we know would have qualified as ADHD as kids? Or even get the label now as an adult? Does the label help? I don't know. It does help us to understand why they do what they do, and sometimes medications can help. I wonder what the difference will be in the next generation, whose kids have been medicated their entire lives and given accomodations in school, instead of having to adjust to it like the kids from my generation? There is a fine line between helping and handicapping, and sometimes I wonder if we over-step that line.

Free Thinker
10-01-2015, 04:01 PM
Here is another example of what Im wondering about:
Today, at the therapists office, the prior client, a high-intensity boy, came running out of the OT room squealing. DS3 covered his ears and retreated to the safety of the seat next to me. Our OT noticed this, suggested we do some Auditory work.
From her point of view, maybe the covering hands over ears was a symptom of more *sensory issues*. Maybe its the combined no-messy and no shoes and no squeals that make it a concern for her.

From my point of view, it was just an incident where a kid was making an aggravating noise. If you cant talk, covering your ears is a reasonable way to communicate that its too loud. Maybe my son is *shy*, maybe hes just used to being approached in a lower-intensity way.
(We do OT for fine motor work, like pincer grasp and eye-hand coordination - not so much sensory issues.)

I do think that a lot of our personal *quirks* would be diagnosed as a disorder. There are some smells that make me gag - fish or overcooked steak/liver at the table, many cleaning supplies.... is there really a need to fix every part of us that makes us different?

Maybe in another generation, they will be treating introversion. Because, you know, humans are social animals, and if we arent constantly wanting the company of other people, we must be anti-social. Thats just the direction Im feeling that the *treat everything as a disorder* mentality is going.

My child that I said had some sensory issues would have acted the same way. Here are a few quirks that I remember- no bright lights, no loud sounds, no binding clothing at all (at 10 wears dresses and leggings- no jeans), lots of food issues- particularly w/ thicker foods like mashed potatoes, peanut butter, anything that was sticky or thick in the mouth- still aversions to things like blueberries in pancakes (2 textures do not mix well), no greenbeans or anything that feels like that- it has nothing to do w/ tastes, it's the way it feels in her mouth. I'm pretty sure I tried the shaving cream to make letters and it was a resounding NO. Rice was fine, as was finger painting. In kindergarten her teacher was very accommodating, made a quiet spot for her to go when the classroom was too much, turned out lights in part of the classroom for her, ect. When she was 3, I was very worried something was wrong- she wanted me 24/7, wouldn't even stay w/ grandparents. Even today, she is every overwhelmed when there are too many kids in a room, if a room is too loud, ect. Now that she's older, she is able to remove herself from situations that make her feel like that, but when she was little it ended in tears or even fits. One Christmas I could see it coming- there were too many people in a tiny room and she just can't handle it. SOme family members thought she was acting like a brat, not happy with presents, ect. but what it really was is over-stimulation and the flight or fight response (IMO anyway). She just cannot handle that- and that does not mean something is wrong with her! That means she prefers quiet to chaos, she has certain food aversions and clothing aversions. I was offered therapy for the food at one point, but did not take it. I'm wondering if maybe your therapist is looking for a series of issues to show something else. People are all different, and we need to embrace that. Celebrate who and what makes your son the wonderful person he is, encourage him in things he struggles with, but don't make it a big deal if he can't do some things. Focus on the things he can do well, and keep nurturing those things!

TFZ
10-01-2015, 04:10 PM
Alexsmom, are you unhappy with your OT? Or feeling a bit harassed that these isolated incidents cause her to want to tack that label on? Do you feel he has a sensory issue? You'd be the best judge. The things you mentioned don't seem too outside of the ordinary to me - even the smell gagging. We don't feed the dog with DS around because when he smells it he will gag until he pukes.

Free Thinker, it's hard to tell who needs what and how much, isn't it? In our school IEPs were only, specifically for learning disabilities. A kid with an IEP could receive modifications to the curriculum - less work, different work, different expectations. Then there were kids with other medical diagnoses that could interfere with learning. These kids would get a 504. They'd get accommodations - extra time, extra help - but we couldn't change the curriculum, and they'd be graded just the same as the general population. there were rules about which kids could receive help and where - could they be pulled out? Do the teachers need a table inside the classroom? - how long, what subjects. It was all because of the limited available staff. A lot of the time it did come down to who needs help more.

alexsmom
10-01-2015, 04:49 PM
Im fine with my OT, shes at the brunt of my thoughts here because its OT Im more dubious about. Things shes trained to look for and treat are appearing to be things that I would generally think are fine, taken isolated. But as Free Thinker says, the summation of all these *sensitivities* might be a bigger issue that isnt being addressed. (I think thats what she meant.)

I love getting the perspectives of the different people here!

Wet dog food made me throw up too.... my mom used to microwave it, She fed them when I went to bed because it was so nauseating for me.

In many ways, I think its important to just *get over it* and be able to cope and not be coddled about everything. Then again, as parents, we need to be on the lookout for our kids, to see when theyre being overstimulated, and to be aware of their issues.

I guess the only controversy is where the need for assistance is on the cusp of not being part of what typical parenting can handle.

havingamagicalday
10-01-2015, 04:53 PM
I'm going to dip my toe into this thread just a bit since I'm not so good with conflict and tell you that yes, I think there are situations when parents have labeled children with normal or transiently "quirky" behaviors unnecessarily but I would also hate to see a child that would truly benefit from therapy miss out because someone felt that since the behavior wasn't a truly "visible" disability, he or she had no need of it.

Our son was always just a little quirky too. He made his milestones at his pediatrician appointments...eventually. When he was about 3 I decided to put him into morning daycare for socialization b/c he loved to spend a large amount of time alone in his room, babbling to himself and lining his toys up into rows. When he was about 4 the daycare staff recommended I attend the free county screening for developmental issues b/c he wasn't like the other kids. They flagged him and tested him at length later and said he tested on the spectrum and invited him to attend the special needs preschool which we declined as he was doing well at his own. We did end up seeking PT and OT for him shortly after that at our pediatrician's recommendation due to a separate medical situation that arose. PT was short term, OT continued and when I asked the OT if we should get him formally diagnosed he said there wasn't much need since we were doing the same therapy whether he was labeled or not. Then we hit kindergarten. We had him formally diagnosed by December and we did it so other people knew how to understand him and manage his behaviors. I'd like to say it was just for the teachers but it helped friends and family too. Once someone has a label, a lot of people feel more comfortable and feel like they understand things now.

When he wasn't diagnosed maybe his flapping his arms at his desk or his meltdown during writing or his chewing holes in his shirt would be considered bad behavior or a tantrum or an avoidance but once he was diagnosed he got an IEP which gave his teachers ideas of how they could redirect a behavior or avoid a behavior or manage it with minimal disruption rather than just sending him to the office. Labeling helped when he was younger b/c he couldn't tell people why he was acting the way he was. Now that he's older, he's been able to express a little more. Last year he would go into the principal's office and sit in her dark closet for 15 minutes some days when the lights were too bright or the noise from the fan or the fluorescent lights was too loud or everything was just too much and he had to be away from people for a moment. Part of that self-awareness came through therapy and understanding his disorder. Another benefit from his label is that he understands he has a LEGITIMATE neurobiological disorder that impacts his body as a whole. He's not crazy, he's not a freak (some of the lovely terms that have been thrown at him), his brain just takes in info and processes it differently than most and he's not alone in this b/c the labels help him find others with similar issues.

Have I had to ride that line between figuring out if a behavior was d/t ASD or just his age? Absolutely. Are there things that he acts like he can't do b/c maybe I'll do them for him instead? Um, yeah. He's kinda like me ;) But we try not to use his labels as an excuse, we just try to work around and through our issues in a different way. Here's the thing: he's absolutely one of those kids you would see come out of the OT's office and think, "there's nothing wrong with that kid, why is he here" but if you spent an hour or two with him interacting in a peer group you'd see the noticeable difference. And you could say he's just quirky, lots of people are quirky too. But quirky behavior at 5 may not be so quirky at 15 or 25 or 35. Some issues are so affecting, invisible though they may be, that they can impact establishing and maintaining relationships, obtaining employment or living independently. So let's say you saw us walk out of that OT's office and he may have been bouncing a little or toe walking or flapping a touch and talking loudly about Super Mario Brothers. What you didn't see was that he was talking about Super Mario Smash Brothers for the fifth hour that day and was unable to hold any type of conversation with someone. You didn't see that he had chewed a hole in the neck of his shirt just that morning at school because he was trying to cope with all the auditory input and visual input and smells and the fact that it's lovebug season and OMG HE HATES ALL BUGS AND FLYING THINGS SO MUCH. You didn't see that he came home from the first day back at school after a break, nonverbal and white as a ghost, wrapped himself up tight in a quilt for an hour with an ipad and then vomited before dinner because of the stress. You didn't see that he circled our living room flapping his hands and blowing air out of his nose in bursts like a bull for two hours only stopping to intermittently bash headfirst into the couch a few times but calmed and rested once I figured out I could lay him down on the ground and lay myself over him with deep pressure for several minutes. Labels have helped us understand. Therapy has helped him gain self-awareness and skills to manage the things that bother him. Therapy has taught me how to help him too b/c he's not going to therapy as often now and he's eventually going to cease going except as needed.

So that turned out way longer than I meant it to be but hopefully that explained my perspective from my experience. Btw, my daughter had difficulty in school last year finishing work, talking in class, staring into space. My gut reaction was, oh crap-she's totally has an attention disorder like her brother. But then I took a deep breath and big step back and realized she was a) a totally normal kid who couldn't sit in a seat for 6 hours a day with minimal interaction and b) a totally normal daughter of mine who had been a dreamer and socializing fool since day one. So I'm not completely label happy ;)

TFZ
10-01-2015, 05:13 PM
What's the saying - something about if you go to a neurologist, they'll tell you it's a neurological problem. If you go to a behavior specialist, they'll tell you it's a behavioral problem. It's a guessing game. Is my mistrust of doctors showing? I need HawaiiGeek to come set me straight, lol. I know most medical professionals mean well. But they don't know everything.

havingamagicalday
10-01-2015, 05:38 PM
No, medical professionals do not know everything. As a medical professional (of the furry types) I feel comfortable saying that sometimes medicine involves some intuition as well as science and that's why I think it's important that people listen to their gut too. No one knows your child like you do. If something's not sitting well with me or I'm uncertain, I'll get a second opinion. Ultimately if you think there might be an issue and you seek a medical professional's opinion you're going to have to either trust that person or get enough of the same opinion that you trust the opinion. Sometimes it is a guessing game and sometimes it's really freaking clear and someone just has to accept the opinion. That being said, I've been on the (very frustrating) receiving end of different specialties thinking the problem at hand is related to their specialty and if I wasn't personally involved it almost would've been comical to hear their arguments and egos go at it.

skrink
10-01-2015, 06:17 PM
We've done the specialist rounds and all the fun that went with it. No one agreed on much, and I ended up wanting to bang heads together. Eventually we found a program at a large children's hospital that does a multi discipline evaluation (process takes up to a year to complete) that included a complete physical workup, OT/PT/speech eval, psych testing, and behavioral eval. It's how did ended up with her ASD dx. After talking with the team and doing research on my own I'm pretty confident it fits. Our experience with OT was lousy. Dd would melt down and get physical very frequently, so most of her time getting very expensive "therapy" was spent in time out in their quiet room. Since parents weren't allowed to participate, I didn't know this until months into the program. A few harsh words were exchanged and we never went back. The best outside treatment we've found is through a local CBT therapist. She's not an autism therapist, and ironically has coded dd as being treated for an anxiety disorder or otherwise insurance won't pay. The value of the label for us has been mostly for dd's understanding that yes, she's different than her peers, and yes, she has a lot of difficulties with things that are easy for most people, but she's not alone. She has gone from hating herself for being a freak (her words) to understanding her brain is wired differently than most, and that there are other folks with that same type of wiring and the same types of difficulties. That's HUGE! I've also gained strategies in helping her cope and compensate for her weak spots.

havingamagicalday
10-01-2015, 07:37 PM
Holy cow skrink, I can't believe your OT didn't allow you to observe some sessions or at least give you a play by play. At some point you'd think they'd realize that if a child had to be in the quiet room most of the session it probably wasn't effective therapy. That's irksome and other harsh words. Admittedly, I have little experience having only had the one OT but I sat in the same room for every session, at his expectation. I tried to interject myself only occasionally, like if the OT asked DS a question about an experience that he couldn't recollect but it was incredibly helpful for me to see what the OT was doing, how he was doing it and how DS responded so I could reinforce the techniques at home in between sessions. I think he let every parent or guardian sit in on their child's session. Heck, he used my DD in several sessions to address different issues with DS. Sometimes when we did OT at a local park he would have DD demonstrate exercises on the playground equipment that DS was resistant to try and it would encourage him to move past his anxieties.

Oksana
10-01-2015, 07:37 PM
...After reading through others' responses to your point of view here....why are you still responding like this......why, Oksana, after reading ....

Pdpele, why is my opinion so important to you? I think what I think, and I respond the way I want to respond. Why convincing me is such a big deal for you?

Oksana
10-01-2015, 07:57 PM
What bothers me is that the surge of new diagnoses and therapies may have resulted (I do not think it is just a coincidence) in insurance companies putting caps on payments for therapies.

I remember that 10-15 years ago the number of visits was unlimited. If you needed physical therapy 5 times a week for a year - fine, covered, just send a letter from your orthopedist. Not any more. I have not seen any policies with unlimited visits since about the same time as new labels and new therapies started springing up about 7-8 years ago.

Nowadays, the best policies I have seen have 60 visits a year everything combined (physical, occupational, speech, vision, whatever else) and it is nothing for a child who has real issues. So abuse and overuse by those who do not really need those services harms children that do. At least in our less-than-perfect healthcare system.

alexsmom
10-01-2015, 08:05 PM
Yah, Skink, that sounds pretty bad. The one place we go, and the one we had a PT eval at, both had the parents in the room. DS9 has also been called in to demonstrate things neither the OT nor I were limber enough to manage. :p

Our Aetna plan would cover 60 sessions per year, if they deigned to cover what we need. And I dont have any sympathy for insurance bastards - theyre making a profit of billions per year, and charging us an arm and a leg - and for what? They cover flu shots. Even when I was pregnant with DS3, it was some 3k out of pocket for the same service i got with DS9 that was covered.

And FWIW I havent been offended by anything anyones said here. But I have learned lots and gotten new perspectives!

Riceball_Mommy
10-01-2015, 08:15 PM
I'm still hesitant to commit to any therapies because that will cost me a copay. I had to pay the copay for an office visit for my daughter's flu shot. It's not like therapies are cheap even if your insurance covers it, even with copays that adds up fast. I was told I should go to 2-3 visits for PT to learn exercises for my knees and I just still can't bring myself to commit to paying that out. I can't feel sympathy for the insurance company either and at the end of the day they probably would have raised costs and covered less anyway because the business model of making it unlimited for everyone probably wasn't rolling in the big bucks.

pdpele
10-01-2015, 08:30 PM
I am not trying to convince you of anything Oksana. You can remain convinced about something you clearly know nothing about. And I guess it was silly to point out your insensitivity in ignoring people's heartfelt explanations of how literally lifesaving labels and therapies can be for some. It just struck me as unbelievably callous.

And now you take the further step of blaming people and their kids for crappy health insurance policies. Given the context of this thread, are you actually talking about kiddos with anxiety, SPD, Add, etc that you singled out for mockery in your earlier posts?! So glad you are not in charge of deciding whose issues are worthy of coverage.

Oksana
10-01-2015, 09:33 PM
...So glad you are not in charge of deciding whose issues are worthy of coverage.

Rest assured, I have no plans to work as a case manager, even though my graduate degree is in Health Policy.

HawaiiGeek
10-01-2015, 09:35 PM
Oksana why people are getting upset with you is because you make it sound like your DD has a real disease and therefore needs therapies and insurance coverage and that our children with autism don't have a real disease and therefore don't need therapy and insurance coverage. I hope that isn't what you really mean, but it does come across as insensitive. I always feel a particular kinship with parents of children with special needs because it is a difficult journey and that goes for any special need.

murphs_mom
10-01-2015, 10:09 PM
Are we over-labeling our kids just to explain their personalities?
IMO, yes. But not all kids.


Are *problems* being found just so they can be treated?
Again, IMO, yes. For some kids/adults.


Is *Sensory Processing Disorder* really a disorder, or just a variant of fully functioning humans?
Sometimes, yes. Sometimes, no.

Edith Bunker, Amelia Bedelia, Dennis the Menace, Chrissy Snow, Barney Fife, and 'The Professor' from Gilligan's Island. When I was a kid, these were just funny, quirky characters that represented someone (or several someones) we all knew in real life. Today, these same characters would all be labeled and in therapy or therapies. The more I watch older television shows (thanks MeTV), the more I'm convinced we're expecting people to function within tighter and tighter boundaries. And it seems to start earlier and earlier. A fellow homeschooler was telling me tonight at the 4H meeting that her sister-in-law is working in a state-funded daycare, and they're being forced by the state to 'evaluate' the babies and toddlers in their care, refer them to DSS so they can get them into therapy, AND they're being forced to send all the data to the state...so they can be tracked. Just like the kids in public schools are being tracked.

I do agree that it's getting out of control, but I'd like to throw in the opinion that it's not always the parent pushing for a diagnosis or therapy. It's the medical professionals, teachers, administrators, and county early intervention workers who are fueling the fires many times. Think about it. The more cases of 'whatever' they can come up with, the more hours they can log, the greater the need to hire additional helpers, and the more justification they come up with for more federal funding. It's a monster out of control. That doesn't mean, however, that there aren't some kids & adults who truly need and benefit from the therapy.

We have a quirky girl who's got issues. Good and bad. We went through testing, diagnosing, and discussions on prognosis, therapies, and such. In the end, her dad and I agreed that we preferred no label. She is who she is. We also agreed, though, that she had some stuff that was in need of help: speech and coordination. We paid out of pocket for the diagnoses, part of the therapy (the stuff not covered by insurance), and spent a lot of time doing the therapy at home. She improved. A lot. When she went in for her well-child checkup at 8yo, however, her pediatrician began the exam by stating his opinion that she was 'on the spectrum' and in need of a full evaluation. I was effing livid. W.T.F.? Where the hell was this a**hat when she was 4yo, we had concerns, and decided to take her to a Johns Hopkins facility for a full evaluation? OUT OF OUR POCKET? He poo-pooed our decision. And when they declared that she wasn't on the spectrum, his response was, "See, told you there was nothing to be concerned about." Two years later, he was pulling a 180 and deciding that she was on the spectrum because he felt she was. Period. We were then told that she'd be dropped as a patient if we didn't have the testing done. Eff him. Know what his big, red flag was that she was autistic? Cause she wouldn't talk to him or look at him. She'll talk to a tree stump, a door knob, or anyone who's willing to discuss her favorite subjects (MLP, dolphins, fairies, reading, art, fashion, singing, mythology, babies, sperm - a fascination lately...she's intrigued by the sperm bank concept, or whatever else she's into at the moment), but she has no interest in him. Why? Cause he's creepy in a creepier-than-Mr.-Rogers sort of way. So it's a symptom when you don't like creepy people, now. :wasntme:

I've met kids who can't speak at all (and they're over 5yo), self-stem by rocking steadily most of the day, want nothing to do with anyone else, and can't bear to be touched. It just felt so wrong to put DD in the same file folder with them. I agree...there are kids with BIGGER problems than my kid. Her problems are still real. Just not in the same ballpark. She'll never be 'typical' or 'normal', but I have hopes that she have a decent life, be able to support herself, and maybe even have a family of her own some day (her greatest desire right now). I can't say that for some of the kids I've met. Dd's problems are real. They're problems that are worrisome, tiresome, and annoying at times. Those other kids, OTOH, have problems that are overwhelming, never-ending, and soul-sucking. I feel for those kids and their parents, and I think it's really unfair for DD's pediatrician to try and put her in the same diagnosis folder.

We need to go back to allowing people to be a bit different, a little quirky, and free spirits. If they aren't hurting anyone, if they're happy, and they're making progress in life, why not let them be?

I spend my day working with architects, engineers, and financial wizards. You wouldn't believe the number of times I've heard 'I don't like mushy foods', 'I can't stand rap...it's too loud', or 'I hate the way the wind feels on my skin'. NO ONE is queuing up to diagnose or provide therapy to these people (hmmm, there are a couple who could use it tho); cause they're adults. If kids were to say these things, OMG! Quick! Get the phone book so we can find an OT, PT, or SLP! I can't stand the feel of certain cheap tags in the back of my shirts/blouses. So friggin' what? Apparently there were enough people bugged by them that Hanes decided to make tagless t-shirts. No one says 'boo' if you're adult who doesn't like tags. They go out of their way to make garments that will appeal to you. Be a kid of 5 or 8yo who says you don't like something, suddenly they're going to label you and plunk you in therapy. Double standards suck.

Ending rant now cause HTGAWM is on.

Oksana
10-01-2015, 10:16 PM
... you make it sound like your DD has a real disease and therefore needs therapies and insurance coverage and that our children with autism don't have a real disease and therefore don't need therapy and insurance coverage....

If someone (pdpele) chooses to see it in what I write - fine with me, there is nothing I can do about someone's perception.

Here is how I see it:

Some medical conditions are clear-cut real - whether you have it, or you don't, you can take a look at the test results and see. Not much wiggle room, not much fraud. Need treatments, need therapies. Cannot live/function normally without them.
Are all (say) CP cases real - yes. And all require therapies for improvements.

Some medical conditions are more gray area, with a spectrum from the slightest to the severest, with little definitive testing, more based on observations, parental concerns, behaviors and etc. A lot of room for undue parental concern, fraud (for attention or for situation at school), over-diagnosis.
Are ALL (say) ADD cases real - no. Some are real and some are not (made up by schools or by parents). Real ones need intervention, made-up and over-diagnosed ones do not.

pdpele
10-01-2015, 11:14 PM
Oksana if only your last post was your second or third. Sure. I agree, mostly...Your previous posts didn't even acknowledge, though, *real* medical and/or behavioral conditions that can't be diagnosed with a test. I'm thinking you mean "objective" test like a blood test, Xray, CT scan, MRI, or what-have-you. Just b/c a condition doesn't have a definitive test, doesn't make it not *real*. So I don't think I put words in your mouth. You lumped such non-objective test diagnoses in with ridiculousness like just not liking the movies 'cause they're too loud. Or shaving cream 'cause it's messy. As if that's what some of us were talking about.

And btw - your "clear-cut real" medical conditions - it's not a competition. They are not any more "real" just because we can test for them than other "real" conditions that we can't currently test for in an objective way. Have you heard about the guy looking for his keys in the dark?

Guy is looking on the pavement at night where the streetlight is shining. Passerby stops to help. Says, "What are you looking for?" Guy says, "My keys. I must have dropped them somewhere." Passerby says, "Ok, why are you looking right here, do you think you dropped them near here?" Guy says, "No, but this is where the streetlight is shining. I can't see over there."

Oksana
10-01-2015, 11:32 PM
Pdpele, have you heard of an expression "there are no healthy people, only under-diagnosed ones".

And AM started the thread with shaving cream and loud noises.

And yes, I do believe in conditions that can be proven with an objective test and everything else is a far-fetched maybe.

And I am not the callous one. The one who equates inability to walk with inability to put hands in the shaving cream is the callous one.

muddylilly
10-01-2015, 11:35 PM
I know that there are a lot of parents sharing their personal stories here, and I think that is causing some to take other poster comments personally.

I really don't think that any poster here is pointing a finger at any other poster saying, "You are a phony." If you are interpreting it that way....well....

Please don't take other's comments personally. I agree with most of the comments that appear to be taken offensively. I would not agree if anyone was saying, "Poster X is full of it, and their kid has nothing wrong." That isn't what's happening here, though.

I was the only one that came remotely close to that.....and Alexsmom, seriously, give your 9yo a table knife and a few juicy steaks...or even pancakes for dinner...he'll be fine :) Or maybe he could use a knife with some pie or roasted veggies ;)

CrazyGooseLady
10-01-2015, 11:37 PM
Okay, skipping over some and replying to orginal poster.

I have one of those kids with labels. He was apraxic at 3, maybe on the spectrum. Each person he has seen it has gotten milder and milder as we have gone along. He is now 8th grade, I just took him off the the IEP for his writing issues because I wanted him to take a real class before he goes to his choice for high school. (The class most appropriate was at the same time as his special ed class. It also meant stopping speech therapy through the school.) The teacher in the regular class assures me he is working at grade level. Taking him off the IEP I think was the right thing to do.

But, to get back to your kiddos. The not speaking one...hopefully this has already occurred to you...when my son was 3 and only saying 20 words and was angry he couldn't talk, I taught him some baby sign language and it really helped him to relax and feel "heard". Simple stuff...water, milk, potty, eat...we had a few more. He has learned to talk and can do very well when he is mindful and speaks slowly. For him, he also had some sensory issues...everything went in the mouth, he could spin on a swing for ages after anyone would have puked and needed to touch everything. And...it turns out it was all related to him not having good muscle tone in his eyes....he couldn't focus them on the same thing. When he got vision therapy....the sever ADHD stuff went away with the sensory issues. (He still gets distracted and needs to move, just not nears as much.) Another kid we know had the same eye issues...only, he stayed near his mother, wouldn't touch anything, and didn't want to get dirty because he couldn't see stuff clearly (seeing two of everything.) How kids react to the same thing...it can vary.

3 is a bit young, but it can't hurt to have him checked to see if he has a lazy eye. Or your older son too if you are worried about it. My son wouldn't pick up a pencil to save his life....there is "normal" and then there was my son...WAY over there (usually running as fast as he could!)

Anyhow...trust your mom-gut feelings. They tend to be right if you can find the right person to listen to you. Do we over label...maybe...but those labels can also change over time. They don't have to stay the same. And yes, you can use them how ever is beneficial to you...insurance, getting out of going to dreaded relatives house...whatever.

alexsmom
10-02-2015, 12:15 AM
Wow! My 3yr old loves spinning on the OT swings - OT has commented on how excessively long he can spin. And hes ataxic, inconsistent tone, all those symptoms. Not that I want to start another therapy, necessarily.
There is no doubt in my mind that my 3yr old is *label worthy*. And aggressive work in speech therapy and OT has given him vocal words and the ability to coordinate for making signs. (We are probably now getting near the point where his vocalized words outnumber his signs (we still learn signs because when he is tired or upset, he loses his voice first, his hands next).)

My older one will be fine, Im sure, if hes given practice using a knife. He was my sample of someone who I dont think really needs outside help or a label.

Thanks for the tip on vision therapy though - we havent tested that, because he is able to see really complex things - undoing childlocks, tweezering small beads into test tubes, etc.

Aandwsmom
10-02-2015, 01:36 AM
Just your friendly Admin popping in!
Reminder to play nice. There is another person on the other end of that comment.
We are all grown-ups and while we may not all agree, we don't need to take a great subject and skew away from the original intent of it!
Thanks everyone!

CrazyMom
10-02-2015, 03:33 AM
Oksana wrote: "I think most of us here grew up before the proliferation of 'invisible disabilities' - sensory processing, overexcitability, anxiety, add etc etc. How did we manage? Does anyone regret not going through therapies in their childhood?"

Oksana...I'd like to answer this question...in hopes it'll provide some needed perspective.

I had generalized anxiety disorder....before it had a name...starting in early childhood.

Do I regret not getting therapy and treatment in my childhood? YES! My Gods YES! GAD was HORRIBLE to me as a child. I missed 50 days of school a year, leaped out of vehicles, ran and hid, had anxiety attacks that felt like I was dying. At age 6...weekly...I felt like I was DYING. My childhood was a pure unadulterated hell because of a chemical spill in my head that no one understood. I had truancy officers at my house, social workers asking if I was being abused, my mother was beside herself because she didn't understand why I couldn't FORCE myself to go to school. The only way I can describe it is to say that asking me to go to school....was like asking me to walk blindfolded into traffic. Every instinct in my body screamed NO...NO..you cannot do this or you will die. It was terrifying for my parents. It was terrifying for me. Every day. For years.

Would I have liked some therapy, some understanding, some treatment? You better believe I would have. It would have been life changing. It would have been such a relief, such a comfort, such a freaking hope... It would have ended the fights and the stress and a million tears.

After highschool, it took me three tries to finish an associate's degree....because of panic attacks. I lost jobs because I'd go to lunch and never return....because I physically couldn't make myself...I'd have idiopathic paralysis. (which posed a problem for getting a good recommendation...lol)

When I finally left home....I investigated my anxiety, researched my options, got HELP...and started medication. (This had to wait until I was on my own...because I had parents who didn't "believe" in invisible illnesses, and feared the taboos associated with mental illness. Because my mom ALSO has brutal GAD...she feared treatments, medications, doctors, labels, etc. HER anxiety would not allow me to seek treatment for mine!)

Starting medication for GAD....was like night and day. It was like dense eerie fog clearing to a gorgeous sunny day. I couldn't believe normal people had life so easy. It felt amazing... to feel happy and content, to not worry incessantly to the point of exhaustion.....to not have white hot panic that made me fear death on a weekly basis.

On medication, I was able to go back to school for a four year degree, hold decent jobs, hold community leadership positions, perform in plays, have easier relationships with the people who'd stood by me, be a decent wife and mom....I was able to LIVE. And be normal. (ok, debatabley normal...lol...normalish?)

So yeah....when someone refers to anxiety disorders...and flippantly says "how did we ever manage? Does anyone regret not going through therapies in their childhood?".....wow...I've gotta tell ya....to me, that statement seems really really ignorant of how brutal and life impacting these issues can be.

I'm giving you the benefit of the doubt that you didn't mean to be insensitive, and that you just don't realize the crippling severity some of these issues can embody......and I don't mean this as a call out post to continue debate or whatever....I just wanted you to understand how it might feel to someone whose life was deeply affected by something you don't consider "real".

I think everyone understands what you were getting at for the most part, I even agree with some of it. But your post kinda came off like you were saying....my kid has a *real* problem and people with these *fake* issues are a bunch of whiners who don't know what real problems are. (again, don't mean to pick on you....just trying to help you to understand how you might have been perceived)

What I went through for 20 years wasn't fake. Yes, it's "real"...and yeah, I am deeply, deeply sad that I didn't get treatment as young as age 6.

I really hope that you can see my purpose in writing this...is not to be confrontational....but to help you understand.

momto2js
10-02-2015, 08:09 AM
I grew up with what would be today called SPD and likely inattentive ADHD. Instead I was put in special ed classes to teach me to read. I did not know that not everyone heard the kid across the room tapping the table with his pencil. I did not know the overwhelmed feeling wasn't usual. I did not have the knowledge to tell my 3rd grade teacher that I would be so much better off if I could sit in the front row of the classroom on the side so I could not see the rest of the kids. Instead, spent the day trying to filter out what most people don't see at all and it was exhausting.

Now as a adult I have developed strategies to cope well. I do sit in the front where I can not see the rest of the room. I am an adult so I can leave most any room I need to gather my self. I don't go to overly crowded places, because they are not fun for me. As a kid, i went where I was told, sat where I was told, and suffered silently because the people around me didn't know and I didn't know not everyone suffered, I thought it was normal. If there are things you can do to make life easier, adjustments that can make things less intense, or a better understanding of what your child is experiencing, I'm not sure it is an overuse.

azdad
10-02-2015, 09:44 AM
It got me thinking, though. Are we over-labeling our kids just to explain their personalities? Are *problems* being found just so they can be treated? Is *Sensory Processing Disorder* really a disorder, or just a variant of fully functioning humans?

(Not denying that anyone or their kids have *more than usual* symptoms. If someone told me that about my 3yr old Id think they were idiots.)

Great question... I decided to skip over the middle part of this thread, so my apologies if I restate the obvious or something that was already said.

I brought my son to speech therapy twice a week for about a year - he couldn't vocalize his R's and L's. Got to know some of the other kids in the waiting room and their parents. The range of challenges those kids were facing stunned me, from mild like my son to profound. I don't know all their technical diagnosis, but no doubt whatsoever that they had issues and could benefit greatly from working with skilled therapists.

So as far as I am concerned, the labels themselves are not an issue. Now if they get applied too freely, isn't that inevitable when you need that label to get the resources? We paid out of pocket for a year, and it was NOT cheap.

Oksana
10-03-2015, 02:05 AM
...but to help you understand.

...it did help to understand. I do get all raw and angry from 'walking in my shoes', but I wouldn't want to 'walk in your shoes' either. Sorry you had to go through all that.

CrazyMom
10-03-2015, 10:24 AM
CP isn't easy. I'm guessing your life carries more than a little stress, Oksana. For what it's worth, I don't think anyone here means to be hurtful to others...it's just the human condition to be more familiar with your own circumstances. When those circumstances are very challenging....it just makes it harder. No worries.

I hope we eventually fix the health care system so everyone gets the treatment and therapies they need. People with physical disabilities, and people with mental health issues...both....get screwed over by the current system.

I learn stuff about what other people go through here all the time. Sometimes it's really eye opening. I've put my foot in my mouth about a hundred times....said something hurtful without realizing it. Meh....sucks to be human.

Most everyone has a "human" moment here and there on here....but I honestly don't think anyone is intentionally mean. Lot of us deal with (or dealt with) some really painful stuff. I think we'd all agree that everyone's challenges matter.

Anyway....I'm glad my story kinda helped.

squares
10-03-2015, 04:31 PM
And I am not the callous one. The one who equates inability to walk with inability to put hands in the shaving cream is the callous one.

Nobody equated those, you're the one who took that leap.

I personally have multiple disabilities that even you would consider "real" - provable with objective scientific tests, no gray area, and considered to be serious.

I do not feel in the least bit threatened or insulted that some parents here have concerns that their children may have difficulty coping with everyday situations, and may be concerned that this difficulty coping could hinder that child's life.

On the other hand, it is indeed insulting to dismiss those concerns out of hand. No, a shaving cream issue isn't the end of the world, but I feel safe assuming that this is an example, part of a larger fabric that is difficult to pin down. And, for the record, my very real and provable disabilities started with symptoms that were difficult to pin down, so that metric doesn't give any more or less weight to the concern.

squares
10-03-2015, 05:34 PM
Also, by that metric, no-one here should be talking about reading delays or dyslexia because that would insult people who are blind. Which is, of course, absurd - we're all allowed to have problems even if somebody has it worse.

Aandwsmom
10-04-2015, 12:53 AM
Last Warning.
Several complaints have been made about some attitudes within this thread.
Here is a reminder of the forum rules.
The Secular Homeschool Community FAQ (http://www.secularhomeschool.com/faq.php)
If it continues, then this thread will be closed.
Reminder: There is a human being on the other end of that comment. You might think you are being funny or smart but sometimes that comes across as snarky and can hurt feelings. We are all here for each other to help, not hinder or hurt.
Thanks everyone!

LKnomad
10-04-2015, 05:20 PM
Wow, I go to a conference, come home, and bam!

I wanted to take a few minutes to address the DXing of invisible disabilities for both AM who asked the original question about labels, and Oksana who has her own set of issues with her child, who has a visible disability.

All children with disabilities, visible or non visible head into the path of DX exactly the same way. We as parents, or our doctors as professionals, know something is not right. Sometimes milestones are not hit, this can be physical like not sitting by 9 months, or verbal like making two word phrases by age 2, or social, like not making eye contact, and the list goes on. These things can lead in two directions, either the child is simply a late bloomer or there is something wrong. If the medical community is concerned, evaluations begin. In some situations the DX comes quickly, a child takes a blood test and there is a number and we know diabetes, specific antibodies are found and a child has celiac disease, I assume there are specific tests for cerebral palsy, I don't know much about it.

Then there are the kids where tests show nothing, but something is still wrong. As a parent who has one child on the autism spectrum and the other ADHD and a host of LDs, this is our situation. I also have bipolar disorder which started at 14. None have definitive tests. All have the potential to be debilitating. The problem is, how do we know what is going on with a child.

The next step is looking for clusters of common symptoms that are common to specific disabilities. Speech patterns, social behaviors, play behaviors, sensory behaviors, mood changes, and the list goes on. When you don't have a test, it is very very difficult to figure out why a child is having the issues they are having.

So why shaving creme? Because specific clusters of behaviors are common to specific disabilities. Not wanting to touch shaving cream is not a disability, but when an OT sees a child avoid a specific activity that other children typically enjoy, it raises a potential red flag, and will tell that OT that this may be an avenue to explore. Does a child have an aversion to tactile experiences? If there is a cluster of behaviors this may be a red flag for sensory issues, which may be a red flag for autism. Now if a child has a big red flag already, like lack of speech, it becomes more important to find those clusters so a proper DX can be made.

AM - you ask about labels. From my own experience, if a professional believes that your child has a potential label and can offer help, I would go for it. This is what happened to my younger child, who we now know has ADHD and dysgraphia and other LDs, and who is homeschooling. Something was wrong early on. At the age of two they were on the fence so the psych from regional center said, we are going with autism for a year, and then we will meet at age 3 to reassess. For one year my son was treated with various therapies for specific symptoms that they found during the eval, at age three the DX was switched from autism, to expressive-receptive speech disorder and phonological speech delay, at age 7 ADHD was added. The label gave me the connection to regional center or the school district so that the therapies could be provided, and the specific symptoms and goals designated the therapies that were needed at that exact time. The labels were fluid and changed as needed, the therapies changed over time as well. Now at age 13 we have OT for upper and lower body coordination, as well as small motor skills, speech for pragmatics, and RSP for learning disabilities. What will we need next year? We shall see. I hope less.

Now you might ask, are visible disabilities more important that invisible ones. Should kids who have problems physically be given priority over those who have issues like ADHD, ASD, emotional instability, OCD, bipolar disorder, conduct disorder, explosive personality disorder, and other invisible disorders? I think the answer to that has been on TV all week. Is this a question we really need to ask?

I hope this does not offend anyone. I have been gone and I really wanted to address AM's questions but have been stuck on my phone for 4 days. I am not trying to beat a dead horse.

azdad
10-04-2015, 06:01 PM
Now you might ask, are visible disabilities more important that invisible ones. Should kids who have problems physically be given priority over those who have issues like ADHD, ASD, emotional instability, OCD, bipolar disorder, conduct disorder, explosive personality disorder, and other invisible disorders? I think the answer to that has been on TV all week. Is this a question we really need to ask?


Beautifully put. Thanks for your post.

crazyme
10-04-2015, 06:21 PM
LKnomad--you put it all so eloquently! I think part of the question is not so much as seen and unseen, but the variety of severity. And reading LKnomad's post made me think: perhaps the discussion we should be having (we as in the collective, societal 'we') is not should other disabilities take preference over others (WHICH IS NOT TO SAY ANYONE HERE IS SAYING, but something I have seen other places), but how can we shape our society so everyone gets the help they need. Barriers to learning can hurt a child's success in life. But Okana's also right in that it cannot come as an additional cost to those you spend their lives in and out of the doctor's office because there is no other choice. In such a wealthy, advance society, why can't we figure out how to meet every child's needs?

Oksana
10-04-2015, 06:31 PM
...the question is not so much as seen and unseen, but the variety of severity....

exactly!!
...and severity is just easier to see in 'seen' than in 'unseen'

Diggerbee
10-06-2015, 11:22 AM
I've been thinking about this topic a lot lately. The preschool my son attended when he was 3 (he is now 5) told us that he had possible sensory issues, but they couldn't describe any coherent, ongoing, behaviors that we could take to a doctor or therapist (nor did my husband or I have any concerns based on his behavior at home). At pickup, they would say things like, "He seemed to be rubbing his feet on things a lot today" and give us meaningful looks, but there was never any pattern or coherent symptom set. We researched SPD online, and he just didn't seem to fit any of the symptom lists. We also suspected the preschool was getting kickbacks for referrals to a local occupational therapy center, which offered all the students "free evaluations" for sensory and developmental disorders. These were supposed to be optional, but when we refused to sign the permission slip to have an evaluation done during class time (we really resented the idea of our kid being handed over to a for-profit business with a vested interest in finding something to treat), the staff got all weird on us.

Our son does have some quirks; for example, he'll sometimes flip out crying in public restrooms because he hates flushing the very loud commercial toilets, so I have to flush for him after he leaves the stall. Five seems a little old for this, so now I'm guiltily thinking, maybe he really has had a sensory issue all along, and he would really benefit from working with an OT. Or maybe all kids have a few things like this that they're weird about, and he'll grow out of this in a few more months. I don't know. But I hate that these fears have been planted about behavior that could be a perfectly normal developmental stage.

You know some of those public toilets sound like freaken jet turbines when they flush, and they are very loud. I had an automatic one that was super loud go off while my youngest at the age of 4 was sitting on it. It scared her to death. The poor kid levitated off the giant man eating toilet and into my arms, pissing all over me and the stall. And after that, she would pee her pants before using an automatic toilet. This went on for a couple years. She is 10 now and can use them but is still jumpy about them and their noise. I used to have to go into the stall with her and press down on the seat while she used it to ensure that it couldn't accidentally go off, because it didn't register her weight.

Children's sensory processing is different from ours. They are younger and more sensitive across the board. As we age our sense of hearing, sight and smell go way down. We might not get what they are hearing or feeling because we just lack the sensitivity to do so. It is to the point that teens use special ring tones to signal each other, that middle age adults usually cannot hear anymore (http://www.nytimes.com/2006/06/12/technology/12ring.html?_r=0).

This is not to negate any legitimate conditions that children may have or deny that they need assistance, but it is to point out that children are more sensitive than adults are to the environment. It's all new to them. Their senses are more delicate and easily overwhelmed. Their little brains and nervous systems are still developing.

I was a very sensitive child and felt that people often ignored that. So when I had children I took care to give them some quiet and to pay attention to their needs in this area. Kids get overwhelmed by stimuli all the time especially when they are going through developmental leaps.

Children are wired for survival too. And part of that is that their senses are to keep them alive in spite of the fact that babies and toddlers make the tastiest treats from an evolutionary perspective. So their responses will be exaggerated in comparison to adults and older kids. Just like women generally have more sensitive hearing than men.

sometimes I think that people forget that we are essentially animals and that children rely on more primitive parts of the brain while their executive functions are still developing and self-arranging.

pdpele
10-06-2015, 11:31 AM
LMAO diggerbee! Thx for sharing. Surprised you ever got her to use a public restroom again!

Diggerbee
10-06-2015, 11:33 AM
it was not easy.