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Dd is 4.5 (5 in December) and has some sensory sensitivities. I've discussed them with her pedi and he doesn't believe she has a true sensory processing issue or any neurological abnormalities. His main reasoning for thinking this is that DDs sensitivities don't cause issues outside of the home. They're also not consistent and she changes her sensitivity over time. So for example, one month the car seat will bother her and the next it won't.

 

However, she's been really struggling with clothing lately. She's always been sensitive to seems (socks, tags,) and stiff material. However, this is the list of items she won't wear:

Leggings

Jeans

Jeggings

Shorts

Skorts

Dresses that are made of stiff material

Dresses who's seems feel funny

 

at home she mostly wears a tee and undies. When we go out she'll wear cotton dresses or skirts and tee.

 

However, even her undies cause issues lately. She doesn't like how they feel or fit.

 

I'm wondering how to respond to this. It's been exhausting recenty. Meltdowns every time she has to get dressed for the day or bed or to leave the house. I've tried letting her change if she can ask calmly. But that often leads to more tantrums about the various clothing that "feels funny". I've tried telling her that she can't change and must stick with what she chose. This usually leads to me carrying her out of the house in tears. We do a sticker chart and it seems to help. She does do deep breathing.

 

How do you deal with kids who are "neurotypical" but have sensitivities? How do you effectively handle this behavior? I view it as a sensory issue, but still want Dd to understand that a tantrum isn't an appropriate response.

 

Her pedi referred us to a behavorial coach, but they don't take insurance and we can't afford the fee (400+). We can't get to see any specialists without a pedi referral and he doesn't think there's anything neurological going on.

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There are people here with more experience than I have in sensory issues, but I think your ped is not well informed. Sensory issues can certainly change over time. And if the poor kid is having meltdowns over getting dressed to go out, and having issues with her car seat, of course that affects her outside the house.

 

I would not accept his contention that there is no neurological basis. Can you see a different ped or press for at least an OT evaluation?

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Accommodate her. That is really all I can say. Hanna Anderson makes the softest underwear in the world. They are wicked expensive, but they are worth it. Make sure everything she has feels right, down to her socks. It will take some doing, but if you can find 5 outfit and do lots of laundry it will simplify things.

 

As for the issue itself, she may outgrow it. In time she may show more sensitivities. It is hard to say. Lots of docs won't dx sensory if there is nothing else going on. The thing is, there could be something else show up down the road. Time will tell.

 

How is she with noise, lights, crowds? How is her social?

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Dd is 4.5 (5 in December) and has some sensory sensitivities. I've discussed them with her pedi and he doesn't believe she has a true sensory processing issue or any neurological abnormalities. His main reasoning for thinking this is that DDs sensitivities don't cause issues outside of the home. They're also not consistent and she changes her sensitivity over time. So for example, one month the car seat will bother her and the next it won't.

 

However, she's been really struggling with clothing lately. She's always been sensitive to seems (socks, tags,) and stiff material. However, this is the list of items she won't wear:

Leggings

Jeans

Jeggings

Shorts

Skorts

Dresses that are made of stiff material

Dresses who's seems feel funny

 

at home she mostly wears a tee and undies. When we go out she'll wear cotton dresses or skirts and tee.

 

However, even her undies cause issues lately. She doesn't like how they feel or fit.

 

I'm wondering how to respond to this. It's been exhausting recenty. Meltdowns every time she has to get dressed for the day or bed or to leave the house. I've tried letting her change if she can ask calmly. But that often leads to more tantrums about the various clothing that "feels funny". I've tried telling her that she can't change and must stick with what she chose. This usually leads to me carrying her out of the house in tears. We do a sticker chart and it seems to help. She does do deep breathing.

 

How do you deal with kids who are "neurotypical" but have sensitivities? How do you effectively handle this behavior? I view it as a sensory issue, but still want Dd to understand that a tantrum isn't an appropriate response.

 

Her pedi referred us to a behavorial coach, but they don't take insurance and we can't afford the fee (400+). We can't get to see any specialists without a pedi referral and he doesn't think there's anything neurological going on.

 

I will type more later when I have time but that is the definition of SPD in my world.  Much like kids with tics SPD kids often just dig deep and tolerate the issues in public then meltdown at home.  Also the ability to tolerate something changes from hour to hour.

 

I have a child with pretty severe SPD and once she was playing in a bowl of goop (flour and water mixture) she is tacitly underresponsive so typicals seeks to touch and loves touching most things.  But the things she can't touch send her into a tail spin.  Anyway she was LOVING squishing this goop - until she didn't - and then she went into a full blown panic attack and was trying to get it off right.this.very.minute! 

 

She was starting to tear up and running in a panic trying to get into the shower but I could see how that was gonna play out with her getting that goop all over her clothes and skin as she undressed so I had to talk her off the ledge and wash her hands for her in the sink.

 

She got a new bed and bedding - she loves it.  But some nights if she is overtired etc the minute she turms off the lights to go to sleep it begins.  Sheets that were once fine to sit and read in now are too crumpled and wrinkled and lumpy and scratchy. If I catch it before she spirals she will be fine and we make some adjustments.  The other night it happened and I send my husband in to check and the next thing you know she is sobbing and can't touch even my sheets and had to sleep on the floor for a few hours.

Edited by mermaid'smom
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Accommodate her. That is really all I can say. Hanna Anderson makes the softest underwear in the world. They are wicked expensive, but they are worth it. Make sure everything she has feels right, down to her socks. It will take some doing, but if you can find 5 outfit and do lots of laundry it will simplify things.

 

As for the issue itself, she may outgrow it. In time she may show more sensitivities. It is hard to say. Lots of docs won't dx sensory if there is nothing else going on. The thing is, there could be something else show up down the road. Time will tell.

 

How is she with noise, lights, crowds? How is her social?

I've tried accommodating and it's been expensive. Haha i did see the Hannah Anderson Undies. My issue is that once she gets a pair of her undies on, she can be fine. It may take 3 pairs, but once she gets them on just right she doesn't talk about them all day. She's pretty into her character undies! I can look this weekend at the mall though.

 

I plan to take her to the store today and have her try on clothes. Trying to find pants that she'll wear and hoping I can have luck with yoga pants! I want to accommodate as best as I can.

 

I think my husband struggles because there isn't a diagnosis. He comes from a pretty strict background and when he hears the word "behavorial" he tends to think its not something we should be giving into. I, on the other hand, see a kid who is being tormented by a sensory input.

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There are people here with more experience than I have in sensory issues, but I think your ped is not well informed. Sensory issues can certainly change over time. And if the poor kid is having meltdowns over getting dressed to go out, and having issues with her car seat, of course that affects her outside the house.

 

I would not accept his contention that there is no neurological basis. Can you see a different ped or press for at least an OT evaluation?

I love our pedi. I did find it odd that he said since she's fine out of the house it's not a neurotic issue. Especially since from what I've read, girls are more likely to adapt in public settings in order to fit in. I may call and see if I can get OT referral. Maybe getting it over the phone will be easier than in person.

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I will type more later when I have time but that is the definition of SPD in my world. Much like kids with tics SPD kids often just dig deep and tolerate the issues in public then meltdown at home. Also the ability to tolerate something changes from hour to hour.

 

I have a child with pretty severe SPD and once she was playing in a bowl of goop (flour and water mixture) she is tacitly underresponsive so typicals seeks to touch and loves touching most things. But the things she can't touch send her into a tail spin. Anyway she was LOVING squishing this goop - until she didn't - and then she went into a full blown panic attack and was trying to get it off right.this.very.minute!

 

She was starting to tear up and running in a panic trying to get into the shower but I could see how that was gonna play out with her getting that goop all over her clothes and skin as she undressed so I had to talk her off the ledge and wash her hands for her in the sink.

 

She got a new bed and bedding - she loves it. But some nights if she is overtired etc the minute she turms off the lights to go to sleep it begins. Sheets that were once find to sit and read in now are too crumpled and wrinkled and lumpy and scratchy. If I catch it before she spirals she will be fine and we make some adjustments. The other night it happened and I send my husband in to check and the next thing you know she is sobbing and can't touch even my sheets and had to sleep on the floor for a few hours.

Thank you! Having insight from someone who has been there helps.

 

Wrinkles! Those are her biggest issue lately. She hates wrinkly clothing, underwear, whatever. It's been wrinkles. She can be somewhat talked down from it. If we explain that fabric wrinkles, she might be okay for a night in "wrinkly" pajamas. But not the next night.

 

I will press my pedi more. I really feel that something may be going on. He said that since she's smart, it may be a gifted thing, but I need more answers than that. And honestly, I don't think she's that smart that it should be causing such issues. She's bright, but not over the top smart. And the clothing issue has been a sensory meltdown not a tantrum. It's pretty easy to see difference. She literally claws at the item to get it off!

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Accommodate her. That is really all I can say. Hanna Anderson makes the softest underwear in the world. They are wicked expensive, but they are worth it. Make sure everything she has feels right, down to her socks. It will take some doing, but if you can find 5 outfit and do lots of laundry it will simplify things.

 

As for the issue itself, she may outgrow it. In time she may show more sensitivities. It is hard to say. Lots of docs won't dx sensory if there is nothing else going on. The thing is, there could be something else show up down the road. Time will tell.

 

How is she with noise, lights, crowds? How is her social?

Her school might actually have an OT person there. I'm going to set up those appointments.

 

Crowds she doesn't love. She tolerates them, but voices her dislike.

Noise: she doesn't like loud restaurants and such and gets scared by wind, but also can tolerate it. No meltdowns over it

Smells: she'll run and hide if in cooking something potent. For a couple of months she refused to eat bacon and would run away to her room due to the smell. It's hit or miss, but sometimes smells really bother her. But not as much as clothing.

Light: some times it really bothers her. She complains about the sun being too bright. Used to cry about it in being in her eyes while driving. That's gotten better. But some days she makes me shut all of the curtains because it's too bright when she first wakes up in the morning.

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Her school might actually have an OT person there. I'm going to set up those appointments.

 

Crowds she doesn't love. She tolerates them, but voices her dislike.

Noise: she doesn't like loud restaurants and such and gets scared by wind, but also can tolerate it. No meltdowns over it

Smells: she'll run and hide if in cooking something potent. For a couple of months she refused to eat bacon and would run away to her room due to the smell. It's hit or miss, but sometimes smells really bother her. But not as much as clothing.

Light: some times it really bothers her. She complains about the sun being too bright. Used to cry about it in being in her eyes while driving. That's gotten better. But some days she makes me shut all of the curtains because it's too bright when she first wakes up in the morning.

 

She has SPD just based on this alone.  You need to research and line up your data with what is known about SPD and then educate your ped.  Or find a second opinion from a ped who understands these issues.

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She has SPD just based on this alone. You need to research and line up your data with what is known about SPD and then educate your ped. Or find a second opinion from a ped who understands these issues.

I think her school might actually have an OT person on staff. I see her teacher today and I'm going to look into it. School starts next week and she might be able to see her soon.

 

Paying out of pocket might be tricky. I know our insurance will cover OT, but only with a referral. And the school is free. We do have an HSA account though and maybe that could work.

 

Thanks! I'm going to talk to her pedi soon or ask to see a different one. I know one of the other doctors personally and they might just give me the referral!

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My oldest has with texture. Same brand different cotton texture and he won't wear it. We buy play tops by the dozen when he was newborn to 5. Socks was another battle so mostly he goes without socks. Food is another area but much better since he can cook his own food now.

 

She has SPD just based on this alone. You need to research and line up your data with what is known about SPD and then educate your ped. Or find a second opinion from a ped who understands these issues.

My pediatrician does but he only refer severe cases so we can see someone out of network and pay slightly more. What he means is that it is not severe enough for a label so insurance isn't going to take it.

 

ETA:

Gifted is also a spectrum. Read about OE. Gifted and OE were elephants in the room with my kids pediatrician.

http://sengifted.org/archives/articles/overexcitability-and-the-gifted

Edited by Arcadia
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My oldest has with texture. Same brand different cotton texture and he won't wear it. We buy play tops by the dozen when he was newborn to 5. Socks was another battle so mostly he goes without socks. Food is another area but much better since he can cook his own food now.

 

My pediatrician does but he only refer severe cases so we can see someone out of network and pay slightly more. What he means is that it is not severe enough for a label so insurance isn't going to take it.

 

ETA:

Gifted is also a spectrum. Read about OE. Gifted and OE were elephants in the room with my kids pediatrician.

http://sengifted.org/archives/articles/overexcitability-and-the-gifted[/quote

 

I'm going to push for OT. I also plan to talk to her teacher today to see how I go about getting an eval done through the school. I believe they have OT in house.

 

I'm honestly not sure she's gifted and I hesitate to apply that label. We haven't pursued that testing and probably won't unless we need to for school. But I have looked into it. And when I mentioned it to her pedi he said "yes that could be the root of the problem"

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We have just started to realize that our dd is gifted 2e though I think the gifted label does her a disservice and it should probably just be called Twice Exceptional given how much she struggles in some aspects of school.

I have looked at OEs and Twice Exceptional. Right now, she doesn't have issues at school. Necessarily. She doesn't communicate as effectively when stressed and that's the only issue I am aware of. But her teacher is more than willing to set up a meeting with the school psychologist and OT. I agree that gifted can do a disservice. It can communicate that the child shouldn't have "issues" when in reality being gifted can have its own set of difficulties for the child.

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I agree that gifted can do a disservice. It can communicate that the child shouldn't have "issues" when in reality being gifted can have its own set of difficulties for the child.

The schools know gifted has its own set of issues but it's low on their funding priority. For example social skills therapy, the children on the spectrum from early intervention to 12th grade gets those services first. My DS11 gets recommended for that because he does not want to talk but he is on the lowest priority because of all the people in the list, he has the least hardship with it.

 

However DS11 did get remedial writing coaching because he is technically behind his grade peers. He is a December baby so he entered K at 4yrs 8mths. So if he is behind academically he gets help but for areas where he is ahead, he is not getting any help for math even if he might need it because he gets the 99.9th percentile on state tests. What the teachers did was allow he to skip boring math worksheets as long as he doesn't disturb anyone.

 

My kids school has psych and OT on site on certain days. They rotate among the nearby schools. Set up that meeting to get things started. Paper trail has been very useful for us when it comes to advocating.

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Find a new ped.  

 

As far as the behavioral coach, are you sure it's a coach?  If it's a BCBA (board certified behavioral analyst), fine.  But SPD is so often going to hook up with other diagnoses, you really need to start getting in the stream of people who are knowledgeable enough to help you.  Getting some kind of diagnosis going would get you funding.  I only pay $65 an hour for our behaviorist, btw, and that's for someone with tons of experience with autism.  Was that $400 through a hospital?  Look for private.  

 

Really though, you're getting the blow-off.  Makes me SO angry.  How does not being able to wear clothes comfortably not show up elsewhere?  She's in a preschool?  How do you KNOW she's not having self-regulation and sensory issues there?  I've been reading about how some preschools intentionally smooth coat EVERYTHING.  They may not be telling you what's really going on or noticing.  

 

Girls typically cover for longer and are harder to get diagnosed.  You're going to need to fight and not let them give you the blow-off.  It's clearly SPD, and there could be more going on.  An OT and somebody who knows SPD would not be giving you the blowoff like this.

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Wrinkles! Those are her biggest issue lately.  

 

I not-so-fondly remember the nights when I would hear a noise at 2 AM, and it would be youngest dd awake and straightening the wrinkled blanket on her bed. She slept on TOP of everything, sheets and blanket, and the blanket had to be perfectly smooth. I have no idea what super power woke her up in the night when the blanket got a slight wrinkle, but she wasn't having it! 

 

She had lots of the clothes stuff, too. She didn't have specific types of clothes she wouldn't wear, she could just try things on and immediately know if it would work. She would yank some things off like they were made of fire. Even now, she'll be in the dressing room, and I'll hear "no-no-no-no-no" and a shirt will come flying over the door, lol. 

 

Both of my kids dressed themselves at that age, and didn't need to ask to change outfits. If we had somewhere to be, I just made sure they got dressed in plenty of time to change, just in case some of youngest's clothes developed hitherto unknown evil properties overnight. I don't see any issue with this at all, it doesn't take long to change outfits. My answer would be the same even if I had to help them change, bc that would likely be faster anyway. 

 

As far as acceptable behavior, she is still very young. And some responses are really hard to control. Think of it this way: when a wasp zooms at your head, and you start shrieking and jumping and flailing, are you having a tantrum? If a kid steps in ants and start shrieking and flailing, yelling "get 'em off, get 'em off!!" at full decibel level, even while struggling so hard it's practically impossible for you to help them, are they throwing a tantrum? 

 

Of course you work toward self-control and using techniques like deep breathing and such, but some sensory input apparently registers as pain with certain kids. I know that my dd loved clothes and trying them on, so she didn't just start writhing and screaming at one shirt for funsies, y'know? I also know that I'm a grown woman who knows that I should react much more calmly to a wasp zooming at my head, it would even reduce my chances of getting stung, but I shriek and flail at least half the time. 

 

I'd probably just circumvent the ped for sensory stuff, as you aren't likely to need to go through him for helpful interventions. Just start reading, start talking to people, see what the school has.

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Find a new ped.  

 

As far as the behavioral coach, are you sure it's a coach?  If it's a BCBA (board certified behavioral analyst), fine.  But SPD is so often going to hook up with other diagnoses, you really need to start getting in the stream of people who are knowledgeable enough to help you.  Getting some kind of diagnosis going would get you funding.  I only pay $65 an hour for our behaviorist, btw, and that's for someone with tons of experience with autism.  Was that $400 through a hospital?  Look for private.  

 

Really though, you're getting the blow-off.  Makes me SO angry.  How does not being able to wear clothes comfortably not show up elsewhere?  She's in a preschool?  How do you KNOW she's not having self-regulation and sensory issues there?  I've been reading about how some preschools intentionally smooth coat EVERYTHING.  They may not be telling you what's really going on or noticing.  

 

Girls typically cover for longer and are harder to get diagnosed.  You're going to need to fight and not let them give you the blow-off.  It's clearly SPD, and there could be more going on.  An OT and somebody who knows SPD would not be giving you the blowoff like this.

 

This is a great point!  And I would like to point out that

 

a) at those ages my dd was not struggling in school at all.  She was considered one of the brightest.  It started to fall apart in grade 3 when she was unable to memorize her multiplication tables and when math became more complex and required the ability to do mental math.

 

b) Until VERY recently I had no idea that when my dd is in crisis mode she just shuts down and becomes quiet.  She has a boy in her class very similar to her but when he is pushed to far or gets overwhelmed he throws a chair.  My dd under the same set of circumstances shuts down and becomes quiet and uncommunicative.  Hence teachers keep talking to her and trying to drag answers out of her and her experience in school is much more unpleasant than his because his cues are so obvious.  Now my dd has thera-putty at her desk and I am trying to educate her teachers that when she starts to KNEAD that putty frantically that she is in crisis mode and they need to give her time/space.

 

Edited by mermaid'smom
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We have just started to realize that our dd is gifted 2e though I think the gifted label does her a disservice and it should probably just be called Twice Exceptional given how much she struggles in some aspects of school.

 

Out of curiosity, what would you label the second 'e' if not gifted? 

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a) at those ages my dd was not struggling in school at all.  <snip>

 

b) Until VERY recently I had no idea that when my dd is in crisis mode she just shuts down and becomes quiet. <snip>

 

 

Yep. When kids pick the "freeze" aspect of fight, flight, or freeze in response to stress, it can be much harder for people to recognize they are in distress. For females in particular, shutting down and being quiet is often responded to with pleasure. They are being good little girls. 

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I think mermaid meant it's really funky to have a kid who tests with an IQ as gifted but who has so many SLDs that you can't tell what you're dealing with.  Like my ds gifted, but he struggles with basic things like writing a sentence or even understanding vertical subtraction.  But he's gleefully making scenes for our Twelfth Night clothespin play and listens to college lectures and adult books.  Gifted just really doesn't describe it, lol.  Exceptional, unusual, maybe.  

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Out of curiosity, what would you label the second 'e' if not gifted? 

 

I would still label one of the exceptionalities as gifted.  I would just re-term the condition "Twice Exceptional" with one of the exceptions being gifted and the other being a brain based disorder such as ADHD, SPD, etc.

 

I just think having Gifted in the label gives a false sense of educational strength that is misleading when it comes time to work with them.  Or the label should contain reference to the other exceptionality "Gifted-Challenged" or "Gifted-Can't remember!"  LOL!

 

I think the everyday person (and even most teachers) misunderstands the use of the word gifted in this context. Heck I am just starting to digest how my kid who struggles to do basic math could be regarded as gifted.

Edited by mermaid'smom
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I think mermaid meant it's really funky to have a kid who tests with an IQ as gifted but who has so many SLDs that you can't tell what you're dealing with.  Like my ds gifted, but he struggles with basic things like writing a sentence or even understanding vertical subtraction.  But he's gleefully making scenes for our Twelfth Night clothespin play and listens to college lectures and adult books.  Gifted just really doesn't describe it, lol.  Exceptional, unusual, maybe.  

 

Exactly!!  My kid has gifts - trust me I am in AWE of them.  She literally can take a bag of balloons and a dozen barbies and construct a fashion line of clothing for them.  She can sculpt and draw YEARS above her age level.  She can read at University Level and has SIX blogs but if I turn to her right now and ask her the answer to 16-4=? I could be here all day.  We will need fingers and toes and we will probably get it right but maybe not?  And if we got it right and I asked her FOUR seconds later she might get it wrong that time.

 

Her gifts are not relevant in mainstream school and so to label her as gifted in reference to THAT environment is misleading.

Edited by mermaid'smom
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There are people here with more experience than I have in sensory issues, but I think your ped is not well informed. Sensory issues can certainly change over time. And if the poor kid is having meltdowns over getting dressed to go out, and having issues with her car seat, of course that affects her outside the house.

 

I would not accept his contention that there is no neurological basis. Can you see a different ped or press for at least an OT evaluation?

As a mom of a kid with very similar sensory issues (this kid is now 20 years old), it is very clear that your ped is uninformed about sensory issues.  My kid could hold it together in public but would meltdown as soon as it was safe.  And yes, the issues were a moving target.  K would like a food one week and have a meltdown over it being even on the table the next week. 

 

I've tried accommodating and it's been expensive. Haha i did see the Hannah Anderson Undies. My issue is that once she gets a pair of her undies on, she can be fine. It may take 3 pairs, but once she gets them on just right she doesn't talk about them all day. She's pretty into her character undies! I can look this weekend at the mall though.

 

I plan to take her to the store today and have her try on clothes. Trying to find pants that she'll wear and hoping I can have luck with yoga pants! I want to accommodate as best as I can.

 

I think my husband struggles because there isn't a diagnosis. He comes from a pretty strict background and when he hears the word "behavorial" he tends to think its not something we should be giving into. I, on the other hand, see a kid who is being tormented by a sensory input.

I don't think you need to have a diagnosis in order to have compassion.  This is not a behavioral issue, but a neurological issue.  The brain does not know how to moderate reaction to stimulus.  I had someone explain it to me like this.  That tag and those seams on the shirt were like patches of the worst sandpaper on their skin.  The seam of the sock inside the shoe was like having a stone in the shoe.  The shoe not being tied to the right tightness was like wearing shoes two sizes too small or too big.  That waistband was like a garrotte.  Ordinary background noise was like a jet engine in the room.  So, an adult may be able to hold himself together in the short term dealing with that kinds of discomfort, but even adults would be irritable and short-tempered when dealing with it for hours on end.  That is how I was able to get the naysayers to understand that it was not disobedience, but an inability to cope.  (Funny, the most irritable people seemed to be the least understanding, when they were probably sensory challenged themselves.) 

 

I love our pedi. I did find it odd that he said since she's fine out of the house it's not a neurotic issue. Especially since from what I've read, girls are more likely to adapt in public settings in order to fit in. I may call and see if I can get OT referral. Maybe getting it over the phone will be easier than in person.

 

Boys, girls, it doesn't matter.  Holding it together in public is a sign of maturity and the ability to read social cues.  That is a good thing, relatively speaking.  But, they can only hold it together for so long. 

 

Accommodation is a strategy to help in the short-term.  But the goal should be to help change the way the brain responds to stimulus.  The brain is working way too hard when it can't sort it all out. 

Edited by dirty ethel rackham
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I would still label one of the exceptionalities as gifted.  I would just re-term the condition "Twice Exceptional" with one of the exceptions being gifted and the other being a brain based disorder such as ADHD, SPD, etc.

 

 

Oh, that's exactly what our district did, that's why I didn't really get your comment! 

 

My dd was twice exceptional, articulation delay and gifted. 

 

A friend was twice exceptional, ADD and gifted. 

 

Each 'e' was named on our evaluation report in just that way. The special need was always listed first, and it was made clear that it was the priority issue: if a child is eligible for the gifted preschool, but attending would interfere with services for speech, ADD, or whatever, then they had to get the special need addressed. They could not choose the gifted preschool over speech therapy. If there was no conflict, you could get all eligible services. 

 

That dd is off to college this year, so I can't say if it's still the same. 

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We could rabbit trail about this a long time, lol. Like right now I'm realizing how UPSET (removing nasty words) it makes me that people baby my ds because of his behavior and ASD and don't realize how AMAZING and capable he is inside.

Oh this, this, this, and more this. It makes me a raging lunatic when people don't respect what is inside my son. Actually, the only real person who TOTALLY gets him is his BT. If I could have a dollar for every time she has said "he is smart and can connect the dots here- do not let anyone coddle him with this. He is capable!!!!!!" Well I would be rich. But, yes the tenancy is to coddle and tiptoe. Makes me so mad.

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Oh this, this, this, and more this. It makes me a raging lunatic when people don't respect what is inside my son. Actually, the only real person who TOTALLY gets him is his BT. If I could have a dollar for every time she has said "he is smart and can connect the dots here- do not let anyone coddle him with this. He is capable!!!!!!" Well I would be rich. But, yes the tenancy is to coddle and tiptoe. Makes me so mad.

 

People are pragmatic and drop demands when the dc responds with behaviors.  They have to be willing to work through the behaviors to get to the other side, but in many situations (grandparents, etc.) they just aren't going to do that.  They'll drop the demands and say see the problem is you, that you're too picky, etc. etc.

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Find a new ped.  

 

As far as the behavioral coach, are you sure it's a coach?  If it's a BCBA (board certified behavioral analyst), fine.  But SPD is so often going to hook up with other diagnoses, you really need to start getting in the stream of people who are knowledgeable enough to help you.  Getting some kind of diagnosis going would get you funding.  I only pay $65 an hour for our behaviorist, btw, and that's for someone with tons of experience with autism.  Was that $400 through a hospital?  Look for private.  

 

Really though, you're getting the blow-off.  Makes me SO angry.  How does not being able to wear clothes comfortably not show up elsewhere?  She's in a preschool?  How do you KNOW she's not having self-regulation and sensory issues there?  I've been reading about how some preschools intentionally smooth coat EVERYTHING.  They may not be telling you what's really going on or noticing.  

 

Girls typically cover for longer and are harder to get diagnosed.  You're going to need to fight and not let them give you the blow-off.  It's clearly SPD, and there could be more going on.  An OT and somebody who knows SPD would not be giving you the blowoff like this.

 

We really like our pedi and have been with them since birth. I think that he perhaps hasn't understood the full extent of it. I also just found out that our local children's hospital has a 1+ year wait list for a developmental or neuropsych doctor. 

The lady he recommended was a behavioral coach of some sort. She comes to your house and does an assessment and then offers guidance for parents on how to handle behavior. The $400 was for her. Private. A hospital would be covered and we'd juts pay our co-pay which is why I would prefer that.

 

I just found out that her school will not offer OT unless it is interfering with academics. Since she is ahead academically, it would be a fight to get them to do anything. They will evaluate her though so hopefully that will happen next month. The school she will go to for K is much better and has in house therapy for OT and an in house psychologist. I plan to have her seen by him as well.

 

As far as knowing she's not having self-regulation and sensory issues at school, it is a close family friend who is her teacher. We know them personally and I have asked her specifically for insight into the situation. She knows what DD struggles with since we have discussed it. There were 1 or 2 times last year where DD complained about her undies after going potty, but it didn't go further. She has commented that DD is extra quiet in class though and that she never talks as much in class as she does at home.

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I not-so-fondly remember the nights when I would hear a noise at 2 AM, and it would be youngest dd awake and straightening the wrinkled blanket on her bed. She slept on TOP of everything, sheets and blanket, and the blanket had to be perfectly smooth. I have no idea what super power woke her up in the night when the blanket got a slight wrinkle, but she wasn't having it! 

 

She had lots of the clothes stuff, too. She didn't have specific types of clothes she wouldn't wear, she could just try things on and immediately know if it would work. She would yank some things off like they were made of fire. Even now, she'll be in the dressing room, and I'll hear "no-no-no-no-no" and a shirt will come flying over the door, lol. 

 

Both of my kids dressed themselves at that age, and didn't need to ask to change outfits. If we had somewhere to be, I just made sure they got dressed in plenty of time to change, just in case some of youngest's clothes developed hitherto unknown evil properties overnight. I don't see any issue with this at all, it doesn't take long to change outfits. My answer would be the same even if I had to help them change, bc that would likely be faster anyway. 

 

As far as acceptable behavior, she is still very young. And some responses are really hard to control. Think of it this way: when a wasp zooms at your head, and you start shrieking and jumping and flailing, are you having a tantrum? If a kid steps in ants and start shrieking and flailing, yelling "get 'em off, get 'em off!!" at full decibel level, even while struggling so hard it's practically impossible for you to help them, are they throwing a tantrum? 

 

Of course you work toward self-control and using techniques like deep breathing and such, but some sensory input apparently registers as pain with certain kids. I know that my dd loved clothes and trying them on, so she didn't just start writhing and screaming at one shirt for funsies, y'know? I also know that I'm a grown woman who knows that I should react much more calmly to a wasp zooming at my head, it would even reduce my chances of getting stung, but I shriek and flail at least half the time. 

 

I'd probably just circumvent the ped for sensory stuff, as you aren't likely to need to go through him for helpful interventions. Just start reading, start talking to people, see what the school has.

 

I do have some books on sensory issues. I have researched some. Her ability to self-regulate definitely goes in cycles and I haven't figured out if there is a commonality before she hits a rough time.

I don't view her sensory melt-downs as tantrums in the behavior sense. I know that it is a response to extreme sensory discomfort. Definitely different than crying in a store over a toy! She doesn't get negative consequences or discipline for a sensory melt-down. 

I do let her get changed and dress herself. However, it still leads to tantrums. So if we have a lot of time, it is fine and I let her do her thing. But, if we don't then we run into problems. For example, we have to be at church for ministry some mornings and don't have time for 4 outfit changes and the tears in between. So I will try to pick out an outfit that she has worn recently and have it ready. But, it doesn't always work. And waking them early doesn't work since she really needs her sleep in order todo well that day. She is definitely more sensitive when tired! So what do we do then? I have thought about having her pick out her clothes the night before, but even those sometimes are unacceptable the next day. What do you do when you're pressed for time and they won't get dressed? 

 

I am trying to find someone to do an eval, but looking around the cheapest that I could get is $600-800 at the local university. Phd students will do those evals. Honestly, we can't afford that right now which is why I was hoping to at least get the eval done through insurance. I am willing to read and adjust things at home myself, but the eval might be useful in the future especially if she ends up attending a B&M school.

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We really like our pedi and have been with them since birth. I think that he perhaps hasn't understood the full extent of it. I also just found out that our local children's hospital has a 1+ year wait list for a developmental or neuropsych doctor. 

The lady he recommended was a behavioral coach of some sort. She comes to your house and does an assessment and then offers guidance for parents on how to handle behavior. The $400 was for her. Private. A hospital would be covered and we'd juts pay our co-pay which is why I would prefer that.

 

I just found out that her school will not offer OT unless it is interfering with academics. Since she is ahead academically, it would be a fight to get them to do anything. They will evaluate her though so hopefully that will happen next month. The school she will go to for K is much better and has in house therapy for OT and an in house psychologist. I plan to have her seen by him as well.

 

As far as knowing she's not having self-regulation and sensory issues at school, it is a close family friend who is her teacher. We know them personally and I have asked her specifically for insight into the situation. She knows what DD struggles with since we have discussed it. There were 1 or 2 times last year where DD complained about her undies after going potty, but it didn't go further. She has commented that DD is extra quiet in class though and that she never talks as much in class as she does at home.

 

Sounds exactly like my dd at that age - brightest in her class so not viewed as struggling, and very quiet/mature.  The POSTER CHILD of who does not need ANY help to function in school.  But then as school became more complex and she matured it began.  Unfortunately the small school we were in had already pegged her as very capable and mature so it was YEARS of me trying to convince people she was struggling.  Then to appease me they would administer some minor math test (I forget the name) and she would show as being low end of grade level.  But grade level so no problem!!

 

Which seems fine but 1) she was so bright that those scores seemed so misaligned from her intelligence overall.  Esp considering that 2) we we CONSTANTLY doing math at home. For the amount of math we were doing she should have been top of her class.

 

So I relate to the position you are in - gut instinct that something is wrong but not enough people seeing what you are seeing yet.  Kind of like Sunuffleupagus on Sesame Street!

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A SIPT certified OT can evaluate the sensory.  Maybe grab your phone and video your DD as she struggles.  Take the video to your ped and politley ask for the referral, and if the ped cannot trust your judgement enough as the mother of his patient, find a new doctor.  Seriously.  

 

ETA:  Make a list of all her behaviors.  Write each thing down and show that you are serious and are deeply concerned about your child.  Present the list to the ped as well.

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A SIPT certified OT can evaluate the sensory. Maybe grab your phone and video your DD as she struggles. Take the video to your ped and politley ask for the referral, and if the ped cannot trust your judgement enough as the mother of his patient, find a new doctor. Seriously.

 

ETA: Make a list of all her behaviors. Write each thing down and show that you are serious and are deeply concerned about your child. Present the list to the ped as well.

Thank you. There is a certified OT at her school so I am hoping an eval with her will be a good tool for the pedi to see. I've gone through her behaviors a bit, and I'm wondering if he just thinks of extreme cases as true cases. He often mentions that his Dd is very similar and calmed down by9. Well that's great, but we have 4.5 years until 9! So I wonder if he sees DDs thriving at school and in the annual ASQ assessments as reasons why she wouldn't have a neurological issue. But that's not true.

 

We went shoe shopping. To 3 stores and offering her any shoes she wanted regardless of price. No luck. She needs to just try one shoe on and declare its not the right fit. Shoe shopping shouldn't be that distressing for a child!

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As someone who has BTDT, it is completely ok to toss a ped out the door and find a new doctor.  My previous ped, who was very good in many regards and who I liked immensely as a person did not have expertise in neurodevelopment issues. That's ok.  I just wasted too many dang years being blown off before I finally got to someone who could help us.  I think the point being made above from others is that you've got enough red flags that it's time to move forward in getting help for your kid.

 

Can you find a developmental pediatrician? That might solve two problems for you---finding a qualified ped in neurodevelopment stuff as well as someone who is going to be well connected into the PT/OT world.

 

 

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As someone who has BTDT, it is completely ok to toss a ped out the door and find a new doctor. My previous ped, who was very good in many regards and who I liked immensely as a person did not have expertise in neurodevelopment issues. That's ok. I just wasted too many dang years being blown off before I finally got to someone who could help us. I think the point being made above from others is that you've got enough red flags that it's time to move forward in getting help for your kid.

 

Can you find a developmental pediatrician? That might solve two problems for you---finding a qualified ped in neurodevelopment stuff as well as someone who is going to be well connected into the PT/OT world.

I don't need a referral for a developmental ped? My sister has one and didn't need a referral for her autistic son. However, she did need a referral for her daughter who has less several LDs. I assumed I would need one as well? If not, I will begin looking.

 

I honestly am hesitant to toss out Pedi. Living in the city, it isn't exactly easy to find a pedi and get into one. There are pedi wait lists and they can take a long time. So I could look and get on a list, but it could take a while to switch.

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I haven't read all the responses yet.  But with my seven-year-old, we went up a size in underoos.  She was just about ready for size six and I got her size eight.  That didn't work with my youngest.  We tried several styles and sizes...and she hasn't worn underoos for the last year and a half.

 

With my oldest, I found a couple of fleece outfits - pants and a zip-up sweatshirt, both really really soft.  She would wear one outfit while I washed the other, and then we'd switch.  Two outfits, all fall/winter/spring.  Again, they were a size too big so nothing was "too tight".

 

We've had constant battles with shoes.  My older daughter spent two years wearing nothing but green rain boots, in all weather.  We've reached a good place with shoes now: Keen-type sandals in the summer, and Mary Janes in the winter.  Again, a size or two too big.  I gave up on socks, but she has to wear slippers around the house in winter.

 

I lack fashion sense, but even I know that sometimes what my sensory-sensitive kiddos wear is cringe-worthy.  But I pick my battles with sensory issues - I'd rather they try a variety of foods that they might not like, than wear coordinated outfits after a fight to get the uncomfortable clothing on them.

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I don't need a referral for a developmental ped? My sister has one and didn't need a referral for her autistic son. However, she did need a referral for her daughter who has less several LDs. I assumed I would need one as well? If not, I will begin looking.

 

I honestly am hesitant to toss out Pedi. Living in the city, it isn't exactly easy to find a pedi and get into one. There are pedi wait lists and they can take a long time. So I could look and get on a list, but it could take a while to switch.

 

I wouldn't get rid of a doctor that you otherwise like and trust either. Nor do I fault him for not understanding the full scope of SPD.  I'm LIVING it and don't always get it.  But I would educate him and get him on board so that he can be be on the same page.  SPD is a complicated disorder and it's reach is more extensive than you realize at her young age.  It will impact so many things that will require his and other practitioners support as she ages.  I can't imagine the relationship being successful long term if he doesn't understand her medical condition so it's best to see if you can get him on board now.

 

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I haven't read all the responses yet.  But with my seven-year-old, we went up a size in underoos.  She was just about ready for size six and I got her size eight.  That didn't work with my youngest.  We tried several styles and sizes...and she hasn't worn underoos for the last year and a half.

 

With my oldest, I found a couple of fleece outfits - pants and a zip-up sweatshirt, both really really soft.  She would wear one outfit while I washed the other, and then we'd switch.  Two outfits, all fall/winter/spring.  Again, they were a size too big so nothing was "too tight".

 

We've had constant battles with shoes.  My older daughter spent two years wearing nothing but green rain boots, in all weather.  We've reached a good place with shoes now: Keen-type sandals in the summer, and Mary Janes in the winter.  Again, a size or two too big.  I gave up on socks, but she has to wear slippers around the house in winter.

 

I lack fashion sense, but even I know that sometimes what my sensory-sensitive kiddos wear is cringe-worthy.  But I pick my battles with sensory issues - I'd rather they try a variety of foods that they might not like, than wear coordinated outfits after a fight to get the uncomfortable clothing on them.

 

yes the trick is knowing what there preference is.  My dd prefers things to be SKIN tight so going up a size would make it worse.  We need a size smaller if that makes sense.

 

But there is no rhyme or reason sometimes.  No sleeves, no socks, no leggings - but skintight pants are ok.  I could go on and on

 

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Our insurance allowed us to do a few things. We picked option 2, fwiw with one kid and option 3 with another:
 

1. Just go to the developmental pediatrician. They were considered an in-network doctor, and I didn't need a referral. I just had to list them as that child's primary.

2. Keep my ped, and go to a developmental ped and pay the "specialist" in-network doctor fee.

3. Go to a specialty clinic and get an evaluation done.  I had to pay the specialist in-network doctor fee and a % of a some other testing billing code fee.

 

FWIW, we found it easiest to just call up whomever we wanted to see, ask them if they would run our insurance, and estimate cost to us.  It was seriously way easier than some of the other things we had to fight our insurance on.  Particularly if your child is young, as yours is, more intervention tends to be covered.  In our previous state, stuff before age 5 had good coverage. In our current state of residence, it's before the age of 10.

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We loved our pediatrician and stayed with him from infancy until we moved away. But he had a tendency to try to explain things away instead of looking further into our concerns. Once we had diagnoses in hand from other sources, he was completely on board and worked with us very well.

 

I think pediatricians are used to parents bringing up concerns and wondering if they are valid, and they might go too far in trying to reassure parents that all is well.

 

If I could go back in time, I would make specific appointments to talk about our concerns, instead of just bringing them up during the regular well visits. I tend to listen and nod my head, so if I could go back in time, I would practice speaking up and disagreeing politely before the visit, so that I could feel more confident about being insistent. I would be armed with many examples, written down, and I would point out that a parent sees much more at home than the doctor can during the short visit.

 

If you go to your pediatrician again with the school's OT evaluation report in hand (after you have it), I suspect you will be taken more seriously.

 

I agree that it sounds like SPD.

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yes the trick is knowing what there preference is. My dd prefers things to be SKIN tight so going up a size would make it worse. We need a size smaller if that makes sense.

 

But there is no rhyme or reason sometimes. No sleeves, no socks, no leggings - but skintight pants are ok. I could go on and on

 

My Dd needs to have them fit "perfectly". She also knows that she wears a 4T in most clothes. So trying to convince her to wear her 3T undies is impossible. Some days she is fine. Tries on 2-3 pairs and settled on one. No rhyme or reason. I'm hesitant to try Hannah Anderson because I'm not convinced it will fix it. Her clothing issues are so fickle haha.

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  So if we have a lot of time, it is fine and I let her do her thing. But, if we don't then we run into problems. For example, we have to be at church for ministry some mornings and don't have time for 4 outfit changes and the tears in between. So I will try to pick out an outfit that she has worn recently and have it ready. But, it doesn't always work. And waking them early doesn't work since she really needs her sleep in order todo well that day. She is definitely more sensitive when tired! So what do we do then? I have thought about having her pick out her clothes the night before, but even those sometimes are unacceptable the next day. What do you do when you're pressed for time and they won't get dressed? 

 

 

I'm not sure, that's really tough. My dd was more consistent; she would usually know upon trying on if something was acceptable or not. She might later discover that there was a hidden itchy part or something, but tried and true favorites were pretty reliable for us. 

 

The brush therapy geodob mentioned might be worth checking into; it seems like it might address a more global sensitivity? 

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