Dealing w/ a gifted 11 year old's Sensory Processing Disorder meltdowns
May 4, 2016 12:52 PM Subscribe
My 11-year old daughter is an incredibly smart, straight-A student. She's in the gifted program, she scores in the 99th percentile on pretty much every standardized test, she reads at a 12th grade level. She has a gift for coding and she makes her own apps. She also has sensory processing disorder, which results in hide-in-a-corner-and-cry meltdowns.
Her meltdowns at school can be triggered by the smallest of things. Her class was working on writing projects today and the sound of everyone typing on their keyboards sent her into a a full-fledged screaming/yelling/crying meltdown. The teacher asked her to go to the library to work, thinking it would be quieter. While she was in the library she was "venting to herself" -- saying that everyone was too loud, idiots who didn't know how to type, etc. At this point the assistant principal had to come and get her, and they spent 20 minutes in the hallway just trying to get her to calm down.
The teacher and assistant principal did everything right -- offered her the chance to work in a quieter room anywhere in the school, went on a walk around the building with her, let her go to the bathroom and regroup. She lashed out at them, yelled at them, and just refused to move out of the hallway. When she did go back to the classroom, she collapsed into a crying ball on the floor again.
Her current teacher has warned me that such behavior will not be tolerated in middle school. Also, this hurts my daughter socially -- the other kids avoid her for the most part, although she does have 2 good friends. We go see a child psychologist every 3 weeks.
My daughter is also in speech therapy ... her SPD makes it hard for her to feel where her tongue is in her mouth as well, so she has trouble saying some sounds.
The meltdowns seem to be increasing. I realize that these meltdowns are painful for my daughter, that the typing on the keyboard really does feel like a thunderstorm in her brain.
But ... what can I do? I just feel so emotionally exhausted and sad every time I receive a call or email from her teachers. I'm going to increase the frequency of the visits with the psychologist, but what else can I do? I don't want her to disrupt the class like this, and I want her to feel confident and to have friends. I try to support her any way I can .... I'm at all of the class parties, I volunteer at the school, I go on all the field trips I help her do her homework at night, we talk about how she can best manage her behavior before she drifts off to sleep at night.
My husband typically has 80-hour weeks between grad school and work, and we don't have any family support close by, so I'm looking for advice on what I can do to help her and to minimize meltdowns. I just feel so helpless and depressed about this situation right now.
I should state that she feels bad after the fact -- terrible, in fact -- but during a meltdown it's like she has no idea that she is being incredibly rude and disruptive.
Her meltdowns at school can be triggered by the smallest of things. Her class was working on writing projects today and the sound of everyone typing on their keyboards sent her into a a full-fledged screaming/yelling/crying meltdown. The teacher asked her to go to the library to work, thinking it would be quieter. While she was in the library she was "venting to herself" -- saying that everyone was too loud, idiots who didn't know how to type, etc. At this point the assistant principal had to come and get her, and they spent 20 minutes in the hallway just trying to get her to calm down.
The teacher and assistant principal did everything right -- offered her the chance to work in a quieter room anywhere in the school, went on a walk around the building with her, let her go to the bathroom and regroup. She lashed out at them, yelled at them, and just refused to move out of the hallway. When she did go back to the classroom, she collapsed into a crying ball on the floor again.
Her current teacher has warned me that such behavior will not be tolerated in middle school. Also, this hurts my daughter socially -- the other kids avoid her for the most part, although she does have 2 good friends. We go see a child psychologist every 3 weeks.
My daughter is also in speech therapy ... her SPD makes it hard for her to feel where her tongue is in her mouth as well, so she has trouble saying some sounds.
The meltdowns seem to be increasing. I realize that these meltdowns are painful for my daughter, that the typing on the keyboard really does feel like a thunderstorm in her brain.
But ... what can I do? I just feel so emotionally exhausted and sad every time I receive a call or email from her teachers. I'm going to increase the frequency of the visits with the psychologist, but what else can I do? I don't want her to disrupt the class like this, and I want her to feel confident and to have friends. I try to support her any way I can .... I'm at all of the class parties, I volunteer at the school, I go on all the field trips I help her do her homework at night, we talk about how she can best manage her behavior before she drifts off to sleep at night.
My husband typically has 80-hour weeks between grad school and work, and we don't have any family support close by, so I'm looking for advice on what I can do to help her and to minimize meltdowns. I just feel so helpless and depressed about this situation right now.
I should state that she feels bad after the fact -- terrible, in fact -- but during a meltdown it's like she has no idea that she is being incredibly rude and disruptive.
Oh, poor little pumpkin. She sounds a lot like my eleven year-old kiddo... very very bright, but a MASSIVE challenge to parent, too. Some thoughts:
- If you're in the US, and kiddo is in public school, the VERY FIRST THING you need to do is look into getting her an IEP. An IEP is ahhhhhhhmazing - it's the difference between "your kid is being a problem!" and "your kid HAS problems, and here are all the resources we're going to use to help her with them!" Seriously. IEP, IEP, IEP.
- Prior to the implementation of the IEP, see if the school will let you implement some ad hoc solutions to soothe the SPD... earplugs, perhaps, or the ability to take twenty-minute breaks in the library whenever she feels overstimulated. It sounds like academics are NOT a problem for her, and that she's pretty mature in general, so I think she could definitely handle it.
- PREVENTING meltdowns is infinitely easier than STOPPING in-progress meltdowns, I have found. Once the kid is in meltdown mode, they are NOT fully responsible for their behavior... the lizard-brain takes over, and it's just SHEER RAGE until it burns itself out. So in our house, we focus on prevention... "if you're feeling angry, here are five things you can do to get control of your temper"... "here are some words you can use to let your teachers know you need some alone-time", etc.
- Feel free to MeMail me any time. I love Wee Thumbscrew so much, but that kid has been a holy terror and a half, and I think I may kiiiinda be getting the hang of managing him.
posted by julthumbscrew at 1:05 PM on May 4, 2016 [18 favorites]
- If you're in the US, and kiddo is in public school, the VERY FIRST THING you need to do is look into getting her an IEP. An IEP is ahhhhhhhmazing - it's the difference between "your kid is being a problem!" and "your kid HAS problems, and here are all the resources we're going to use to help her with them!" Seriously. IEP, IEP, IEP.
- Prior to the implementation of the IEP, see if the school will let you implement some ad hoc solutions to soothe the SPD... earplugs, perhaps, or the ability to take twenty-minute breaks in the library whenever she feels overstimulated. It sounds like academics are NOT a problem for her, and that she's pretty mature in general, so I think she could definitely handle it.
- PREVENTING meltdowns is infinitely easier than STOPPING in-progress meltdowns, I have found. Once the kid is in meltdown mode, they are NOT fully responsible for their behavior... the lizard-brain takes over, and it's just SHEER RAGE until it burns itself out. So in our house, we focus on prevention... "if you're feeling angry, here are five things you can do to get control of your temper"... "here are some words you can use to let your teachers know you need some alone-time", etc.
- Feel free to MeMail me any time. I love Wee Thumbscrew so much, but that kid has been a holy terror and a half, and I think I may kiiiinda be getting the hang of managing him.
posted by julthumbscrew at 1:05 PM on May 4, 2016 [18 favorites]
Definitely increase her visits to the psychologist, that's great.
Have you explored occupational therapy (OT)? That might really help her figure out how to interact with her peers in a school environment, and how to manage her SPD in a non-disruptive way.
Is she getting enough sleep? Being well-rested makes a big difference to one's emotional stability.
Her current teacher has warned me that such behavior will not be tolerated in middle school.
It's awesome that you're looking out for your daughter and trying to improve her school experience and that of her peers. I guess I would just say, don't let yourself be pushed around by teachers. Your daughter isn't a class clown or a goof-off or otherwise disruptive just to get attention; she has a disorder. If you can get her teachers to understand that and work with you, the results will probably be better in the long run.
posted by schroedingersgirl at 1:06 PM on May 4, 2016 [9 favorites]
Have you explored occupational therapy (OT)? That might really help her figure out how to interact with her peers in a school environment, and how to manage her SPD in a non-disruptive way.
Is she getting enough sleep? Being well-rested makes a big difference to one's emotional stability.
Her current teacher has warned me that such behavior will not be tolerated in middle school.
It's awesome that you're looking out for your daughter and trying to improve her school experience and that of her peers. I guess I would just say, don't let yourself be pushed around by teachers. Your daughter isn't a class clown or a goof-off or otherwise disruptive just to get attention; she has a disorder. If you can get her teachers to understand that and work with you, the results will probably be better in the long run.
posted by schroedingersgirl at 1:06 PM on May 4, 2016 [9 favorites]
(Also, if there's only ONE thing I wish I'd known before dealing with Wee Thumbscrew: The Holy Terror Years, it's that, 1. Contrary to popular opinion, kids generally behave as well as they're ABLE to behave. If she's "misbehaving", it's not because she's being willfully disobedient, it's because she doesn't have the internal resources/skills/abilities to behave better than that. 2. The rules of engaging with her TOTALLY CHANGE if she's mid-meltdown. Teachers, administrators, and anyone involved in caring for her NEED TO KNOW THIS. When my kid's melting down, I can threaten to take away all his toys, to blow up the planet with a fusillade of a-bombs, to feed him to a dingo, it WILL NOT MATTER. I can soothe and coax and be gentle as Mother Theresa, IT WILL NOT MATTER. A kid in this type of meltdown is almost in an animal-like state, and the typical parent/educator tactics will not work. What WILL work varies, and is best addressed by actual experts, not ME, but people need to know that you can't reason/threaten/coax mid-meltdown.)
posted by julthumbscrew at 1:11 PM on May 4, 2016 [16 favorites]
posted by julthumbscrew at 1:11 PM on May 4, 2016 [16 favorites]
Ooooh, this brings back memories. While I never had a meltdown in class like your daughter did, for a time in 4th grade, even the scribbling of pencils drove me crazy and sounded like a drone of bees. I ended up having to wear headphones (that weren't noise cancelling) and did nothing. I also got bullied by an asshole in the class, who ended up being a Republican religious fundamentalists. So sending much love, I remember how difficult it was for everyone involved :(
I wish we were even told about an IEP :( Which sounds like a fantastic option! Another option is you, your daughter, and collaborating with the teacher and principal having code-words or even something non-verbal like a flag to warn of an impeding meltdown.
I also read this in Linda Formicelli's The Renegade Writer, but I think she was talking about how she actually volunteered to run a group facillitation with her kid, teacher, and the classroom, to educate everyone about her kid's disability, and asking for her kid's classmates help in understanding and supporting her. She said that it helped change the tide from fear and confusion of the kids not going on, and it became a really supportive and open environment. If that is in the cards for you, I think it is always good to dispel "otherness" which is what causes isolation, because I think most kids and people are either fearful or want to help but don't know how, in fear of being a potential trigger.
posted by yueliang at 1:12 PM on May 4, 2016 [2 favorites]
I wish we were even told about an IEP :( Which sounds like a fantastic option! Another option is you, your daughter, and collaborating with the teacher and principal having code-words or even something non-verbal like a flag to warn of an impeding meltdown.
I also read this in Linda Formicelli's The Renegade Writer, but I think she was talking about how she actually volunteered to run a group facillitation with her kid, teacher, and the classroom, to educate everyone about her kid's disability, and asking for her kid's classmates help in understanding and supporting her. She said that it helped change the tide from fear and confusion of the kids not going on, and it became a really supportive and open environment. If that is in the cards for you, I think it is always good to dispel "otherness" which is what causes isolation, because I think most kids and people are either fearful or want to help but don't know how, in fear of being a potential trigger.
posted by yueliang at 1:12 PM on May 4, 2016 [2 favorites]
When she is NOT in a meltdown state, is she able to reflect back on these experiences and list out the things that were triggering her and some example solutions to resolve those situations? Can she carry around with her a little formula of if-this-crisis-then-this-response cues?
I have sensory issues as well as general anxiety, and one of my main strategies for coping with both is to plan an escape route during a non-crisis state to help me get through a crisis before it turns to meltdown territory. Like, "oh, this is a terrible environment, I need to calmly get up and tell [so-and-so] that I need to go to [place] right now. If [place] is also bad I will [do x] instead."
posted by joan_holloway at 1:14 PM on May 4, 2016 [1 favorite]
I have sensory issues as well as general anxiety, and one of my main strategies for coping with both is to plan an escape route during a non-crisis state to help me get through a crisis before it turns to meltdown territory. Like, "oh, this is a terrible environment, I need to calmly get up and tell [so-and-so] that I need to go to [place] right now. If [place] is also bad I will [do x] instead."
posted by joan_holloway at 1:14 PM on May 4, 2016 [1 favorite]
Get your daughter that IEP because once she has it things like:
Her current teacher has warned me that such behavior will not be tolerated in middle school stop being a problem. It's not behavior, its a medical disorder that needs some accommodations.
I'm not too familiar with sensory processing disorder specifically, but I feel like everyone in the pre-teen age is more likely to be emotional. When that pre-teen hormone stuff kicks in, everything gets more intense for a while in genera so if you're seeing an increase in meltdowns, that's one potential cause. So, I'm saying time is probably your best friend, but obviously you don't want her to suffer while you wait it out so things like more visits to the psychologist and seeing what resources are available once that IEP is in place are probably key.
posted by GilvearSt at 1:14 PM on May 4, 2016 [4 favorites]
Her current teacher has warned me that such behavior will not be tolerated in middle school stop being a problem. It's not behavior, its a medical disorder that needs some accommodations.
I'm not too familiar with sensory processing disorder specifically, but I feel like everyone in the pre-teen age is more likely to be emotional. When that pre-teen hormone stuff kicks in, everything gets more intense for a while in genera so if you're seeing an increase in meltdowns, that's one potential cause. So, I'm saying time is probably your best friend, but obviously you don't want her to suffer while you wait it out so things like more visits to the psychologist and seeing what resources are available once that IEP is in place are probably key.
posted by GilvearSt at 1:14 PM on May 4, 2016 [4 favorites]
Her current teacher has warned me that such behavior will not be tolerated in middle school.
That's totally unhelpful and untrue (if it's public school, that is). Whatever's in her IEP will carry over to her middle school, and any new accommodations can be added.
posted by Huck500 at 1:15 PM on May 4, 2016 [8 favorites]
That's totally unhelpful and untrue (if it's public school, that is). Whatever's in her IEP will carry over to her middle school, and any new accommodations can be added.
posted by Huck500 at 1:15 PM on May 4, 2016 [8 favorites]
Does she have an IEP? What accommodations are recommended? I too think she needs to meet with someone in OT, this will provide skills for dealing with the world and it's smells, noises, textures and lurid colors.
This disorder is no fun for either the kid or anyone who has to parent or teach the child. A psychiatrist can only go so far, there are other experts who need to be brought to bear.
A child I know is a very difficult kid, also brilliant but really, deeply problematic. His meltdowns resulted in serious violence and he went into residential treatment because of it. It does not get better as they get older without serious intervention.
I wish I had something better to tell you, she may do better in a different learning environment, for example an on-line course she can do at home without dealing with others.
Have you explored medication? Sometimes it can help.
This is serious and it doesn't sound like you have a good diagnosis, action plan, therapies that are addressing the deficits in your child's brain or appropriate accommodation in school.
So absolutely do not let the sun set without calling the inclusion advisors in your child's school to get the ball rolling on this. It will take time and lots of appointments.
This is not a failing of your daughter, or of your parenting or of the teacher's classroom management. This is a devastating condition and it needs to be appropriately managed.
posted by Ruthless Bunny at 1:19 PM on May 4, 2016 [3 favorites]
This disorder is no fun for either the kid or anyone who has to parent or teach the child. A psychiatrist can only go so far, there are other experts who need to be brought to bear.
A child I know is a very difficult kid, also brilliant but really, deeply problematic. His meltdowns resulted in serious violence and he went into residential treatment because of it. It does not get better as they get older without serious intervention.
I wish I had something better to tell you, she may do better in a different learning environment, for example an on-line course she can do at home without dealing with others.
Have you explored medication? Sometimes it can help.
This is serious and it doesn't sound like you have a good diagnosis, action plan, therapies that are addressing the deficits in your child's brain or appropriate accommodation in school.
So absolutely do not let the sun set without calling the inclusion advisors in your child's school to get the ball rolling on this. It will take time and lots of appointments.
This is not a failing of your daughter, or of your parenting or of the teacher's classroom management. This is a devastating condition and it needs to be appropriately managed.
posted by Ruthless Bunny at 1:19 PM on May 4, 2016 [3 favorites]
I would really recommend Occupational Therapy. My daughter has the same issues. Part of it is learning to deal with things that are irritating (recognizing when you are annoyed and at what level of annoyance you are,) using the right tools to help with the situation (using headphones, using a chewy, moving to a quieter place,) and by getting, and enforcing an IEP.
If your daughter has a disability, they cannot punish her for behavior that results from her disability. But schools aren't going to just take your word for it; you need to get an IEP in place, and you need to get her behavior written into the IEP, and steps to mitigate said behavior. Teachers who do not comply with the IEP are the problem, not children who have disabilities.
Sometimes what makes it worse is when other people decide how to "fix" the problem! So your kid's teacher had the right idea by letting her go to a quieter place, but to your kid, it might have felt like she was being punished or being isolated. This is where having multiple tools can be useful. Then teacher can direct with visual cues, or orally, "Do you need to use your fidget? Would you like to sit on the exercise ball? Do you need some time in a quiet room?"
Also, sometimes the solution to overstimulation isn't separation-- sometimes, it is a few jumping jacks, or time in a weight vest, or using a vestibular toy. So part of your IEP could be, "Try joint compression first, then sitting on an exercise ball, then using a fidget, then allow kid to work in the hallway/library."
As for home-help before Occupational Therapy, check out The Zones of Regulation, which is what my child's Speech and OT use with her. This can help give your child the tools to recognize when she's heading toward meltdown, and likewise, tools to help her avoid it.
Sensory kids with language issues sometimes just have a really hard time identifying and expressing that stage of "getting irritated." They feel it, but they can't identify it. So it seems like they go from "fine" to "melted down," but really, the interstitial period was there, just unrecognized. The Zones really help teach them to recognize all of their feelings in a spectrum, which we have found extremely useful.
posted by headspace at 1:22 PM on May 4, 2016 [8 favorites]
If your daughter has a disability, they cannot punish her for behavior that results from her disability. But schools aren't going to just take your word for it; you need to get an IEP in place, and you need to get her behavior written into the IEP, and steps to mitigate said behavior. Teachers who do not comply with the IEP are the problem, not children who have disabilities.
Sometimes what makes it worse is when other people decide how to "fix" the problem! So your kid's teacher had the right idea by letting her go to a quieter place, but to your kid, it might have felt like she was being punished or being isolated. This is where having multiple tools can be useful. Then teacher can direct with visual cues, or orally, "Do you need to use your fidget? Would you like to sit on the exercise ball? Do you need some time in a quiet room?"
Also, sometimes the solution to overstimulation isn't separation-- sometimes, it is a few jumping jacks, or time in a weight vest, or using a vestibular toy. So part of your IEP could be, "Try joint compression first, then sitting on an exercise ball, then using a fidget, then allow kid to work in the hallway/library."
As for home-help before Occupational Therapy, check out The Zones of Regulation, which is what my child's Speech and OT use with her. This can help give your child the tools to recognize when she's heading toward meltdown, and likewise, tools to help her avoid it.
Sensory kids with language issues sometimes just have a really hard time identifying and expressing that stage of "getting irritated." They feel it, but they can't identify it. So it seems like they go from "fine" to "melted down," but really, the interstitial period was there, just unrecognized. The Zones really help teach them to recognize all of their feelings in a spectrum, which we have found extremely useful.
posted by headspace at 1:22 PM on May 4, 2016 [8 favorites]
Yes, you need to initiate the evaluation process for an IEP or 504. Some excellent resources include understood.org and wrightslaw.com. And definitely, OT.
posted by candyland at 1:24 PM on May 4, 2016 [1 favorite]
posted by candyland at 1:24 PM on May 4, 2016 [1 favorite]
Response by poster:
I wasn't there today -- I just got the email from the teacher describing what happened. I'm not at the school every day, maybe once every 4-5 weeks or so? I communicate with her teachers via email on a regular basis though.
We did try OT for a couple of years. The things that she enjoyed in OT were things like climbing on the sensory gym, jumping on the trampoline, laying in the therapy swing. I'm not sure if it was just our OT place, but they seemed to geared towards very young children, and it didn't seem like it was helping that much. We put her into gymnastics since it seemed to incorporate a lot of the climbing and jumping movements she enjoyed. I also installed a sensory swing in her room.
Maybe it's time to re-visit OT, though. I need to find a place that's geared towards older children perhaps.
posted by Ostara at 1:28 PM on May 4, 2016
I wasn't there today -- I just got the email from the teacher describing what happened. I'm not at the school every day, maybe once every 4-5 weeks or so? I communicate with her teachers via email on a regular basis though.
We did try OT for a couple of years. The things that she enjoyed in OT were things like climbing on the sensory gym, jumping on the trampoline, laying in the therapy swing. I'm not sure if it was just our OT place, but they seemed to geared towards very young children, and it didn't seem like it was helping that much. We put her into gymnastics since it seemed to incorporate a lot of the climbing and jumping movements she enjoyed. I also installed a sensory swing in her room.
Maybe it's time to re-visit OT, though. I need to find a place that's geared towards older children perhaps.
posted by Ostara at 1:28 PM on May 4, 2016
Response by poster: She does have an IEP for speech, but all of your comments have made me recognize that I need to get an IEP for the SPD as well. Thank you.
posted by Ostara at 1:29 PM on May 4, 2016 [3 favorites]
posted by Ostara at 1:29 PM on May 4, 2016 [3 favorites]
We signed our middle kid up for mindfulness classes after everything else had failed. His rough years were from 11-15ish, and it got to the point that he was virtually a delinquent, skipping school, acting like a tough, disinterested in applying himself, starting to get into trouble with petty offenses and drugs. He'd been through ages of psychologist/psychiatrists visits, was put on meds (at the request of his biological mom, against his other parents' wishes), and started adopting a sort of victimized persona. It was strange, and hard to deal with. Mindfulness classes weren't a magical fix-all solution, but after a few weeks (of him going to an adult class with me, since we couldn't find any kid-specific ones), he seemed to start to "get it." He's more aware of his impact on others in the moment, which is great, and he's also more involved in recognizing his own state of mind moment to moment. THat helps when he feels the distractions are getting the best of him (he's very susceptible to visual disruption--even tiny movements in his peripheral vision will derail his thoughts for tens of minutes, not just momentarily). Best of all, he asked his mom if he could stop taking meds (prescribed for ADHD, which in hindsight seems like a nearly egregious misdiagnosis or overdiagnosis). Not to mention, I really like going to mindfulness classes!
posted by late afternoon dreaming hotel at 1:31 PM on May 4, 2016
posted by late afternoon dreaming hotel at 1:31 PM on May 4, 2016
Yes, your child needs an IEP, and also as part of that, OT. For many SPD kids, Occupational Therapy makes the biggest difference. You yourself can avail of support from so many places that will help you. SPD Support on Facebook has 33,000 members and is a great place to start to connct with other parents.
posted by DarlingBri at 1:34 PM on May 4, 2016 [1 favorite]
posted by DarlingBri at 1:34 PM on May 4, 2016 [1 favorite]
If it's *at all possible*, and I'm sorry if this is a totally unrealistic suggestion - I would just pull her out of there. And get her into an environment where her abilities and challenges are understood, and teachers are equipped to help her. This made an incredibly huge difference for a few kids I've known (and am related to). (The issues were giftedness [an issue, because they just weren't being engaged] + other stuff, not sensory processing disorder.)
posted by cotton dress sock at 1:34 PM on May 4, 2016
posted by cotton dress sock at 1:34 PM on May 4, 2016
OH! And something that no one told me was that puberty changes everything for a sensory kid. Even if they have had OT for years, and used the same sensory tools for years, going through puberty radically changes their body and the things that are effective.
If your kid is running up to middle school, then she may be on the outside edge of puberty. The hormones that make neurotypical kids emotional and awkward do the same thing to neuro-atypical kids, and neuro-atypical kids may need all new tools to get through it.
Ask your speech therapist for an appropriate occupational therapist for your daughter's age. My daughter is in her teens, and while she may get to run and jump in the ball pit just for fun when things are done, the occupational aspect of her therapy now focuses on her job of going to school and integrating with neurotypical people.
posted by headspace at 1:37 PM on May 4, 2016 [4 favorites]
If your kid is running up to middle school, then she may be on the outside edge of puberty. The hormones that make neurotypical kids emotional and awkward do the same thing to neuro-atypical kids, and neuro-atypical kids may need all new tools to get through it.
Ask your speech therapist for an appropriate occupational therapist for your daughter's age. My daughter is in her teens, and while she may get to run and jump in the ball pit just for fun when things are done, the occupational aspect of her therapy now focuses on her job of going to school and integrating with neurotypical people.
posted by headspace at 1:37 PM on May 4, 2016 [4 favorites]
Both of my kids have sensory issues and we are dealing with them in different ways, based on what is needed. I would recommend a couple things.
If you haven't already, get a full psychological evaluation by a licensed professional in the field. This will help on several levels because it will identify your daughter's strengths as well as weaknesses in a way that is accepted by teaching and medical professionals. This may not be covered by insurance, but it is absolutely worth it. It can be used to formulate an IEP (if necessary) or a 504 (which is what we are doing). The evaluation will touch on specific accommodations or additional resources or professionals your daughter would benefit from.
This evaluation could also turn up some things you aren't aware of. SPD is most commonly a symptom of another thing going on. For instance, many children with ADHD have SPD. So treating a root cause may help address some of the issues you're seeing with the SPD.
Check out the differences between an IEP and a 504 plan. If your daughter doesn't have a disability, the 504 may be adequate and more appropriate. Either way, having the evaluation under your belt helps tremendously with involving the school. The psychologist we're working with will attend school meetings to advocate on behalf of my kid as part of the fee we paid.
Perhaps revisit OT but with specific goals in mind. Find someone who has worked with older children and perhaps a "social skills" class would also be beneficial. I've found that there are some OTs I've not cared for at all and others who have worked wonders. So you might have to do some sleuthing and switching before finding the right person for your daughter. Make sure the OT has clear, measurable outcomes they are working towards. That way you can make a decision about whether the treatment is working or not.
Good luck and my heart goes out to you! This is very hard territory to navigate and is very stressful. You're doing a good job.
posted by LKWorking at 1:43 PM on May 4, 2016 [1 favorite]
If you haven't already, get a full psychological evaluation by a licensed professional in the field. This will help on several levels because it will identify your daughter's strengths as well as weaknesses in a way that is accepted by teaching and medical professionals. This may not be covered by insurance, but it is absolutely worth it. It can be used to formulate an IEP (if necessary) or a 504 (which is what we are doing). The evaluation will touch on specific accommodations or additional resources or professionals your daughter would benefit from.
This evaluation could also turn up some things you aren't aware of. SPD is most commonly a symptom of another thing going on. For instance, many children with ADHD have SPD. So treating a root cause may help address some of the issues you're seeing with the SPD.
Check out the differences between an IEP and a 504 plan. If your daughter doesn't have a disability, the 504 may be adequate and more appropriate. Either way, having the evaluation under your belt helps tremendously with involving the school. The psychologist we're working with will attend school meetings to advocate on behalf of my kid as part of the fee we paid.
Perhaps revisit OT but with specific goals in mind. Find someone who has worked with older children and perhaps a "social skills" class would also be beneficial. I've found that there are some OTs I've not cared for at all and others who have worked wonders. So you might have to do some sleuthing and switching before finding the right person for your daughter. Make sure the OT has clear, measurable outcomes they are working towards. That way you can make a decision about whether the treatment is working or not.
Good luck and my heart goes out to you! This is very hard territory to navigate and is very stressful. You're doing a good job.
posted by LKWorking at 1:43 PM on May 4, 2016 [1 favorite]
I was thinking hormones, too. I was 11 when I got my first period.
posted by Riverine at 1:44 PM on May 4, 2016 [2 favorites]
posted by Riverine at 1:44 PM on May 4, 2016 [2 favorites]
OH! And something that no one told me was that puberty changes everything for a sensory kid. Even if they have had OT for years, and used the same sensory tools for years, going through puberty radically changes their body and the things that are effective.
Oh yes, this is true. I have very mild sensory issues that were hugely exacerbated when I was in middle school, about a year before the time I got my first period.
posted by roomthreeseventeen at 1:49 PM on May 4, 2016
Oh yes, this is true. I have very mild sensory issues that were hugely exacerbated when I was in middle school, about a year before the time I got my first period.
posted by roomthreeseventeen at 1:49 PM on May 4, 2016
OH! And something that no one told me was that puberty changes everything for a sensory kid. Even if they have had OT for years, and used the same sensory tools for years, going through puberty radically changes their body and the things that are effective.
It also changes how medications work, so basically absolutely everrrrrrything you thought you had figured out is rebooting and will change frequently and rapidly for the next 11ish years, so that'll be exciting. Now is probably the time to effectively start over and re-assess every aspect of diagnosis and treatment while you get her formally into the school system for accommodation.
posted by Lyn Never at 2:09 PM on May 4, 2016
It also changes how medications work, so basically absolutely everrrrrrything you thought you had figured out is rebooting and will change frequently and rapidly for the next 11ish years, so that'll be exciting. Now is probably the time to effectively start over and re-assess every aspect of diagnosis and treatment while you get her formally into the school system for accommodation.
posted by Lyn Never at 2:09 PM on May 4, 2016
nthing getting an IEP specific to her SPD needs. A brilliant young person I know well also has SPD and his mom worked hard to get a solid IEP specific to the SPD concerns. It has seen him successfully through high school, and we're working now to migrate those accommodations to college.
posted by AliceBlue at 2:10 PM on May 4, 2016
posted by AliceBlue at 2:10 PM on May 4, 2016
My oldest got a good bit better after putting him on b vitamin and magnesium supplements. He still had difficulties, but, after a few months, he was a lot less crazy making. Magnesium has a track record of helping kids with auditory sensitivities.
posted by Michele in California at 2:31 PM on May 4, 2016
posted by Michele in California at 2:31 PM on May 4, 2016
Just as a note from someone whose (gifted and ADHD) kid is also doing OT for emotional regulation & using the Zones of Regulation -- some OTs appear to do emotional regulation stuff and some don't. It sounds like maybe your OT wasn't doing any emotional regulation stuff. That has been *extremely* helpful for us.
posted by woodvine at 2:55 PM on May 4, 2016 [3 favorites]
posted by woodvine at 2:55 PM on May 4, 2016 [3 favorites]
Best answer: I teach middle school, and we do have students who have similar issues to your daughter. It's a horrible generalisation that your daughter's teacher made about it "not being tolerated" in middle school. I have students with IEPs and 504s and those are taken very seriously. I even have students with learning issues but without an IEP/504 whose needs are taken very seriously.
I'm fairly sure that a 504 would be most appropriate. An IEP requires a specific disability, whereas a 504 is available for any student with some kind of challenge, whether it be physical, emotional, etc. I would also invest in a pair of noise-cancelling headphones. I just bought my own pair, and although my sensitivity to sound is nowhere near as severe as your daughter's, it really is a lifesaver for me. It doesn't remove conversation entirely, but when I have music playing through them, it covers enough.
I would also push for a specific plan for what happens when your daughter has a meltdown. It sounds like they have a menu of options and it sort of depends on who is with her at the time. That's not ideal. It needs to be the same every time so your daughter has a routine and knows what to expect. That helps take some of the anxiety out of the situation too.
What would be ideal is something like this:
1. Teacher gets someone to walk your daughter to a small, quiet room with no other people. Even the library is probably too stimulating. You need an unused classroom or office. But ideally the same place every time.
2. Your daughter gets to calm down at her own pace with limited adult questioning.
3. When your daughter indicates that she's ready, she can choose either to go back to class, or work on the assignment in the alternate location.
4. At a time convenient to the teacher/schedule (i.e. when no students are present), someone walks your daughter back to the teacher to check in about the assignment/missed work from class. This helps reduce the anxiety of returning post-meltdown.
5. The teacher/adult inform you of what happened via email/phone call.
6. You follow up with your daughter about how she was feeling, what she could try next time, etc. If you are uncomfortable with doing this, her psychologist/therapist could also do that. You could also have her write a narrative of what happened. That would help you identify patterns in these incidents too.
If there is a specific time or activity that you know triggers your daughter (sounds like writing time in a computer lab), then avoiding that situation by removing her to a quiet location PRE-meltdown would be great too. We usually write that into 504 plans.
For what it's worth, I think you are a great mom and it sounds like you are doing all the right things. Thank you for advocating for your daughter - parents like you make my job so much easier.
posted by guster4lovers at 3:35 PM on May 4, 2016 [8 favorites]
I'm fairly sure that a 504 would be most appropriate. An IEP requires a specific disability, whereas a 504 is available for any student with some kind of challenge, whether it be physical, emotional, etc. I would also invest in a pair of noise-cancelling headphones. I just bought my own pair, and although my sensitivity to sound is nowhere near as severe as your daughter's, it really is a lifesaver for me. It doesn't remove conversation entirely, but when I have music playing through them, it covers enough.
I would also push for a specific plan for what happens when your daughter has a meltdown. It sounds like they have a menu of options and it sort of depends on who is with her at the time. That's not ideal. It needs to be the same every time so your daughter has a routine and knows what to expect. That helps take some of the anxiety out of the situation too.
What would be ideal is something like this:
1. Teacher gets someone to walk your daughter to a small, quiet room with no other people. Even the library is probably too stimulating. You need an unused classroom or office. But ideally the same place every time.
2. Your daughter gets to calm down at her own pace with limited adult questioning.
3. When your daughter indicates that she's ready, she can choose either to go back to class, or work on the assignment in the alternate location.
4. At a time convenient to the teacher/schedule (i.e. when no students are present), someone walks your daughter back to the teacher to check in about the assignment/missed work from class. This helps reduce the anxiety of returning post-meltdown.
5. The teacher/adult inform you of what happened via email/phone call.
6. You follow up with your daughter about how she was feeling, what she could try next time, etc. If you are uncomfortable with doing this, her psychologist/therapist could also do that. You could also have her write a narrative of what happened. That would help you identify patterns in these incidents too.
If there is a specific time or activity that you know triggers your daughter (sounds like writing time in a computer lab), then avoiding that situation by removing her to a quiet location PRE-meltdown would be great too. We usually write that into 504 plans.
For what it's worth, I think you are a great mom and it sounds like you are doing all the right things. Thank you for advocating for your daughter - parents like you make my job so much easier.
posted by guster4lovers at 3:35 PM on May 4, 2016 [8 favorites]
Also, giving her language to talk to her friends about the incidents would help minimise the embarrassment afterwards.
Even if it's just, "Wow, that noise just got too much for me. I hate the sound of keyboards clicking in a quiet room. So what did you write about?"
posted by guster4lovers at 3:38 PM on May 4, 2016 [1 favorite]
Even if it's just, "Wow, that noise just got too much for me. I hate the sound of keyboards clicking in a quiet room. So what did you write about?"
posted by guster4lovers at 3:38 PM on May 4, 2016 [1 favorite]
I'd suggest a therapist, one that she can develop a relationship with over time and see throughout her school years. Probably not a play therapist, she's too old - but one who specializes in SPD in both children, teens and young adults. You've probably read it, but I just saw this book on Amazon.
posted by onecircleaday at 5:29 PM on May 4, 2016
posted by onecircleaday at 5:29 PM on May 4, 2016
You may already know this, but if you google the term "twice exceptional" you will find a lot of information that might be helpful.
One online resource that might help is Hoagie's Gifted Education Page, especially this page.
The book The Mislabeled Child has a good chapter on SPD.
A few people have mentioned a 504 plan as an alternative to an IEP. I agree this is worth looking into -- with our kiddo (ADHD, dysgraphia), we found it to be much more flexible.
posted by merejane at 5:45 PM on May 4, 2016 [1 favorite]
One online resource that might help is Hoagie's Gifted Education Page, especially this page.
The book The Mislabeled Child has a good chapter on SPD.
A few people have mentioned a 504 plan as an alternative to an IEP. I agree this is worth looking into -- with our kiddo (ADHD, dysgraphia), we found it to be much more flexible.
posted by merejane at 5:45 PM on May 4, 2016 [1 favorite]
I'm an audiologist, not yours, etc.
Children having adverse reactions to sound is more common than one might think. In general, we don't recommend earplugs or headphones to block out noise for children as long as the noise isn't exceeding safe levels. This is for a couple reasons. The big one is that if a child gets used to having attenuation, they tend to have a very difficult time being without it, and for most environments in life you don't want to have earplugs. It tends to make them even more sensitive to sound. The central auditory pathway develops into adulthood. Input stimuli drives this development. It's possible that she will become less sensitive to sound as time goes on, though normal input levels are needed to drive that acclimatization. The other reason is not quite as important for her age as it would be for a younger child, but a lot of learning, especially vocab, is incidental, and you don't want an earplug or headphone to adversely affect that.
posted by Lutoslawski at 6:48 PM on May 4, 2016 [8 favorites]
Children having adverse reactions to sound is more common than one might think. In general, we don't recommend earplugs or headphones to block out noise for children as long as the noise isn't exceeding safe levels. This is for a couple reasons. The big one is that if a child gets used to having attenuation, they tend to have a very difficult time being without it, and for most environments in life you don't want to have earplugs. It tends to make them even more sensitive to sound. The central auditory pathway develops into adulthood. Input stimuli drives this development. It's possible that she will become less sensitive to sound as time goes on, though normal input levels are needed to drive that acclimatization. The other reason is not quite as important for her age as it would be for a younger child, but a lot of learning, especially vocab, is incidental, and you don't want an earplug or headphone to adversely affect that.
posted by Lutoslawski at 6:48 PM on May 4, 2016 [8 favorites]
Is the psychologist helping you or your child? I'd make an appointment with them as soon as possible. Also seconding mindfulness geared towards kids ("Sitting Still Like a Frog" was helpful for my kiddo).
posted by bluedaisy at 7:16 PM on May 4, 2016
posted by bluedaisy at 7:16 PM on May 4, 2016
Hey, a lot of this resonates with my experience with my kiddo. She's really gained enormous self regulation skills in the last year and a half and frankly, I don't think that's really anything I did.
I tried lots of kinds of therapy, techniques, classes, tools etc, and some were somewhat helpful, but the truth is that she seems to have grown out of her tantrums and freak outs.
Really, I think figuring out ways to adapt her world to her was more effective than trying to make her adapt to the world.
It's not an easy answer, but it's what seems true to me.
posted by latkes at 9:27 PM on May 4, 2016
I tried lots of kinds of therapy, techniques, classes, tools etc, and some were somewhat helpful, but the truth is that she seems to have grown out of her tantrums and freak outs.
Really, I think figuring out ways to adapt her world to her was more effective than trying to make her adapt to the world.
It's not an easy answer, but it's what seems true to me.
posted by latkes at 9:27 PM on May 4, 2016
Your description of her meltdowns made me think of the little girl Holly in this British documentary series, Born Naughty. I am not any kind of expert, but one thing the programme explained is that autism presents somewhat differently in girls, such that they are often un- or misdiagnosed. My point is, depending on the details of her condition, your child may benefit from a different kind of intervention, or in fact a different kind of school. Certainly, as others have said, more investigation and an official statement/plan of action (we call it 'a statement' here.)
posted by glasseyes at 3:10 AM on May 6, 2016
posted by glasseyes at 3:10 AM on May 6, 2016
Yes on the IEP for SPD. Like others said the line "such behavior will not be tolerated in middle school" is bullshit coming from someone who is assuming that what your daughter is doing is nothing more than a behavior.
Meantime, you should also figure out how to start building a process for your daughter when she becomes disregulated so that she can start to learn how to pull herself out of that. That's something to discuss with her psychologist.
We're in the middle of that with my son since when he gets disregulated, he can get out of control and that starts to get dangerous as he gets older (doesn't help that he's also big for his age). A plan to work on will help shorten the length of disregulation over time and is rewarding for everyone when it works.
posted by plinth at 8:52 AM on May 6, 2016
Meantime, you should also figure out how to start building a process for your daughter when she becomes disregulated so that she can start to learn how to pull herself out of that. That's something to discuss with her psychologist.
We're in the middle of that with my son since when he gets disregulated, he can get out of control and that starts to get dangerous as he gets older (doesn't help that he's also big for his age). A plan to work on will help shorten the length of disregulation over time and is rewarding for everyone when it works.
posted by plinth at 8:52 AM on May 6, 2016
As an adult with SPD (and autism) I just want to chime in a bit late to stress that acting before the meltdown hits is best. This has two big steps 1) kiddo needs to figure out how to identify she's going into a meltdown and 2) adults in her life need to provide her with a sensory-limited space and let her retreat to it when she feels a meltdown coming on. Everything gets a bit "fuzzy" and unreal when the meltdown starts so having the same location available would be ideal and it should be as free of her specific sensory triggers as possible. Meltdowns are a lot more like GI issues than tantrums - you've had too much of the Thing Your Body Hates and now it's Time to Pay and no amount of willpower can stop it.
I am leery of suggestions for occupational therapy or to make her stick it out. I tried to do that for years and it just led to me hitting a solid wall of burnout at age 25. My sensory sensitivities have not gone away as I've aged, they have gotten more intense. Make sure that whatever professionals she is working with are working with/within her limits instead of pushing her to achieve some neurotypical standard of normal behaviour.
You might find some helpful coping mechanisms in writings by adults with SPD or adult autistics. You don't have to reinvent the wheel here, people like your daughter grow up into adults who can tell you what they've learned.
posted by buteo at 12:25 PM on May 7, 2016 [1 favorite]
I am leery of suggestions for occupational therapy or to make her stick it out. I tried to do that for years and it just led to me hitting a solid wall of burnout at age 25. My sensory sensitivities have not gone away as I've aged, they have gotten more intense. Make sure that whatever professionals she is working with are working with/within her limits instead of pushing her to achieve some neurotypical standard of normal behaviour.
You might find some helpful coping mechanisms in writings by adults with SPD or adult autistics. You don't have to reinvent the wheel here, people like your daughter grow up into adults who can tell you what they've learned.
posted by buteo at 12:25 PM on May 7, 2016 [1 favorite]
This thread is closed to new comments.
posted by If only I had a penguin... at 1:03 PM on May 4, 2016 [9 favorites]