About to lose it. suggestions? X-posted in Gifted forum

[Casha'sMommy]

I've gone round and round here and online attempting to figure out what's going on with dd but haven't gotten very far.
I'm at the point of losing it with this situation and I need to find some way of handling this.
Here's the background:

DD was born with a bilateral and profound hearing loss. She received her bilateral cochlear implants, the first at 12mos and the second at 18mos. She has had age appropriate language since about 15 or 16 mos and now has language skills beyond her age.

DD's fine motor development has always been ahead of her gross motor development. For example, dd had a pincer grasp at 4 or 5 mos and lacing beads were one of her favorite toys at 9mos but she never crawled and didn't walk until 13.5mos. While the walking never concerned me it is still odd that her fine motor skills were so developed at such a young age.
We participated, from 3mos to 3yrs, in some rather aggressive therapy to assist dd in learning to listen and speak. And, as I mentioned above, this was very successful.

At about 18mos, I started to notice dd "reacting" to situations with a lot of sound. For instance, we could go to the store and have no problems however, if I attempted Costco and the grocery store in one day dd may have had a melt down. The same thing happend at my parents house while visiting when dd was about 18mos. At first I thought she must have been over tired or maybe we needed to watch her diet for allergies however, nothing but the sound seemed to be the issue. We're still dealing with all of this and dd is now 4y4mo.

Once dd turned 2 and approached 3 I was assuming that maybe this was just her personality and this too would pass. As I said above, it's still continuing and things don't seem to be getting better but instead are getting worse. Now we are starting to see some issues with bright light. DD fell to her knees in a parking lot because she didn't have her sun glasses and "the light hurts my eyes" was all she could get out of her mouth. It was as if she regressed a couple of years in language there in that parking lot.

For a little while we'd hoped this was just dd being a little intense or sensitive and that the issues we were seeing were a part of dd having what we believe is an eleveated IQ but, as I mentioned, things are getting worse. I suppose I'll x-post in the gifted forum.

Additionally, and this is the saddest part, dd reacts negatively to mil. At the risk of confusing people I'll do my best to explain what's happening there.
MIL seems to talk to dd a lot, so much so that during their last visit dd was crying and told me she wants Grandma to stop talking. The IL's visit 5 or 6 times a year and stay with us for a few days at a time. It seems that when MIL is here she is at dd's side constantly. DD and mil might be looking at a book and mil will just talk about what's in the book, she's not doing anything crazy. However, this does go on from the time dd gets up in the morning until the time she goes to bed at night. Bathtime during their visits usually involve dd screaming, scratching me, hitting me, and pulling my hair. Let me add that bathtime is dd's favorite part of the day. She loves lavender in her water and bubbles once in a while. She floats and "swims" in our garden tub every single night so she isn't wigging about having to take a bath and possibly missing out on something. She has been known to ask to take a bath and ask to go to bed while the IL's are visiting.
I honestly don't know what to think or what to do. I had hoped this was just a thing with mil and that we could address it with her. We have tried that, btw, but mil doesn't seem to get it. I was recently told by sil that the il's say after visiting that I tell them dd is about to lose it but they've never seen it. I should probably mention here that before dd hits the end of the line I can see in her that things are building. It's almost as if something in her vibrates, at least that's what it looks like to me. My mother also sees this in dd although she doesn't necessarily call it vibrating, she doesn't have her own word for it so she uses vibrating to refer to it when we talk.
I want to help dd and I want her to enjoy her grandparents. Any suggestions would be greatly appreciated.
TIA

Cate

I meant to add that some of dd's behaviors have involved hurting herself while appearing out of control. She has hit her head on the floor and during the il's most recent visit, dd threw herself to the floor in the bathroom and hit her head on the toilet.

[Stephenie]

A lot of that sounds like my son who has Sensory Processing Disorder. He's also very bright, possibly gifted. He has the same meltdown over the sun quite often. I'd suggest checking out http://www.sensory-processing-disord...checklist.html .
As for your inlaws.... is there any way for your dd to get a break from her while they are visiting. She probably isn't napping anymore, but maybe have quiet time each afternoon when Grandma is there? And be firm with your MIL about it, that your dd needs an hour each afternoon to be alone. It might help her.

[Casha'sMommy]

Originally Posted by Stephenie

A lot of that sounds like my son who has Sensory Processing Disorder. He's also very bright, possibly gifted. He has the same meltdown over the sun quite often. I'd suggest checking out http://www.sensory-processing-disord...checklist.html .
As for your inlaws.... is there any way for your dd to get a break from her while they are visiting. She probably isn't napping anymore, but maybe have quiet time each afternoon when Grandma is there? And be firm with your MIL about it, that your dd needs an hour each afternoon to be alone. It might help her.

I left this out but we used to remove dd from the situations like that with mil until their most recent visit when dd came to me crying and saying she didn't want to be "locked up alone anymore". I broke down in tears because I was following her lead and she didn't even want me to be with her when removed. She would tell me to go away so I left her to read books, watch a dvd, or do puzzles, or color all snuggled in our bed.
To answer your question, yes we can remove dd from the situation but we need to come up with a better way of doing things.
As for mil, there are some issues there with her not believing me when I say dd is going to melt down. I have had suggestions to allow dd to melt down in front of the il's but I feel that's the wrong thing to do because people, especially dd, are at risk of being hurt physically. There have been quite a few issues over the past 5 years with the il's and I've let dh know that I refuse to communicate with them on it any further and that it's his responsibility. However, dh is very interested in the pov from the mama's here in assisting him in making his parents understand and follow some sort of plan.

I've been reading some things on the link you provided. DD seems to have a handful or similarities. I'm wondering if it's something one can have just a few signs/symptoms of and still be dx'd. More reading to come. Any further suggestions on this would be very appreciated as well as ideas for the ILs.
Thanks.

[Linda on the move]

The book The Out of Sync Child by Kranowitz is a really wonderful read on sensory issues.

It has ideas on things to do to help kids with sensory issues. Getting the right kinds of sensory input (called a sensory diet) helps children cope with the world better. I'd recommend getting the book and starting to try things out and see if you can figure out what is helpful to her.

I don't know that she has enough going on right now for a dx for anything, but she is really young and it sounds like she is at home full time. These issues may become more pronouced over the next few years as her life becomes more complex with additions of things like school, lessons, etc. A good read on general issues related to raising a child who is a little different is Quirky Kids by Klass. One of the things it talks about it how a child's dx can change over the years as their specific issues related to what life expects of them.

[Casha'sMommy]

Originally Posted by Linda on the move

The book The Out of Sync Child by Kranowitz is a really wonderful read on sensory issues.

It has ideas on things to do to help kids with sensory issues. Getting the right kinds of sensory input (called a sensory diet) helps children cope with the world better. I'd recommend getting the book and starting to try things out and see if you can figure out what is helpful to her.

I don't know that she has enough going on right now for a dx for anything, but she is really young and it sounds like she is at home full time. These issues may become more pronouced over the next few years as her life becomes more complex with additions of things like school, lessons, etc. A good read on general issues related to raising a child who is a little different is Quirky Kids by Klass. One of the things it talks about it how a child's dx can change over the years as their specific issues related to what life expects of them.

Conveniently, my library has both of these books.
I'll be on my way there shortly.
Thanks so much!

[Casha'sMommy]

DD is at home full time and we plan to hs so that may be the best thing for dd anyway.

The longer I ponder this today the more things I think of that dd has issues with.
She hates using public restrooms because of loud flushing toilets and hand dryers. This is such an issue for dd that she would prefer to have an accident rather than hear the loud sounds. She can and does remove her processors from her cochlear implants but this completely goes against all that years of therapy have instilled in her. "Keep them on, listen and speak." fwiw, dd bonded immediately with her CI and loves them.
She also cannot stand the sound of ice hitting a glass. Although, a plastic cup is fine.

[meg-momto2]

definitely sounds like SPD to me. is there anyway you can have her implants checked? could they be causing some of the sensitives by amplifying certain sounds? maybe MIL voice hits the right pitch and is just to much for her ears.

[Grace and Granola]

From a practical standpoint, could you help your daughter come up with ways to get her out of the sticky MIL situation? She seems to be at an age where you could talk to her about this. Either explain to her that when she starts to feel "icky" that she can tell MIL, I'm ready to have some quiet time now, grandma. And if she isn't ready for that step, you can give her a code word that she could say to you so you know she needs a break. And ask her what she wants that break to look like.

[joensally]

Originally Posted by Casha'sMommy

DD is at home full time and we plan to hs so that may be the best thing for dd anyway.

The longer I ponder this today the more things I think of that dd has issues with.
She hates using public restrooms because of loud flushing toilets and hand dryers. This is such an issue for dd that she would prefer to have an accident rather than hear the loud sounds. She can and does remove her processors from her cochlear implants but this completely goes against all that years of therapy have instilled in her. "Keep them on, listen and speak." fwiw, dd bonded immediately with her CI and loves them.
She also cannot stand the sound of ice hitting a glass. Although, a plastic cup is fine.

So other than sun in her eyes, it's largely/all sound based? When were her implants last adjusted? We have a relative that got implants as an adult and hates them - still working on getting the "mix" just right on the settings. I wonder if as your DD develops she needs adjustments?

Stephenie and Linda are bang on. If it is SPD, it may become more obvious as she spends more time "out in the world". We didn't know DS has SPD until he started preschool at 3. It has changed over time - some things no longer bother him, other things have come and gone, and certain school-based things are now problematic. With the sun as a one-off event, it could be she was feeling emotionally vulnerable/overwrought at that very moment and the sun was the proverbial straw - or she may need some cute sunglasses.

I don't really understand why you wouldn't let your ILs see a meltdown, or how you could prevent it if they're in the house. My kids are loud when they meltdown, and flinging oneself isn't so quiet. I wonder if they hear but are in denial? Personally, for the sake of your child, her relationship with her grandparents, and your relationship with them - I'd let them get an eye and earful. My MIL used to minimize because she always sees the positives with her grandchildren (a lovely quality, if frustrating for DIL). It took a formal diagnosis and years of problems at school for her to acknowledge that something was going on for DS, and witnessing DD again crawled under a bed screaming her head off over something minor (to the rest of us) to acknowledge that maybe her grandkids were more intense than the average bear. Acknowledging difference can feel like a loss, and grandparents aren't in the trenches with the kids and thus forced to deal with it.

[Rose-Roget]

I was also thinking SPD. The other book I'd recommend, which isn't SPD-related, is Raising Your Spirited Child by Mary Sheedy Kurcinika. Before we came to the dx of SPD with ds, this book really helped us out a lot! It specifically addresses kids who are natural introverts and natural extroverts, which looks at them a little differently than we typically think of introverted and extroverted people. For example, introverts need some alone or quiet time to "recharge," whereas extroverts may "recharge" through social contact. She offers a lot of ideas for how to help kids with all kinds of "spirited" needs, as well as how to mesh the personalities and needs of different kinds of people.

[Casha'sMommy]

re: dd's programming, she's spot on and has been for some time.
fyi, adults have issues with this more often than kiddos because they usually have had some kind of experience with sound even if very limited. They've already formed pathways in the brain telling them what they hear whereas children have not yet done so. This is why early implantion is so key.

mil's voice! DUH! I cannot believe I hadn't thought of that. Interesting. I'm going to contact some professionals in our life to inquire about this.
Additionally, dd want mil's attention and often seeks it out even if it's causing her trouble. I mean, of course she wants her grandmother's attention especially since her little brother was born. What child doesn't want attention? I think dd doesn't understand all of it. And, quite honestly, dd doesn't seem to be able to pay attention to long conversations that she doesn't initiate. She can sit and talk about an insects life cycle or human anatomy for 30 minutes straight and she "hears" everything we say but when she isn't interested in the topic she seems to just tune us out. She has done this the handful of times we've tried to discuss mil with her.

joensally-It isn't so much that I won't let them see her meltdown but dd does this with me once we've gone up for bed. I don't know that she'd even do it in front of others. The biggest issue with the meltdowns is that I'd like to prevent them altogether as dd tends to get hurt as do I. This may not even be possible. idk

[Emmeline II]

Originally Posted by Casha'sMommy

However, dh is very interested in the pov from the mama's here in assisting him in making his parents understand and follow some sort of plan.

Perhaps you could set up a video camera if witnessing a meltdown isn't practical--I know dh's family didn't really "get it" until they saw one. Though they were generally supportive and knew ds was "different" there was also the undertone that we were not disciplining him enough or properly.

If you get an evaluation done you could allow the inlaws to read all or part of it if they don't listen/believe what you tell them. Our OT evaluation was very helpful and we gave copies to ds' teacher, the special ed teacher, his therapist and psychiatrist.

[beachcomber]

Not sure if this has been suggested but have you thought about giving her some time AWAY from your MIL when they're visiting. She could be getting completely overwhelmed by your MIL. My step-mom does this with DD. It took us a long time to get her to back off a bit. DD needs breaks from the stimulation or she goes squirrely. DD is also very sound sensitive and my step-mom was constantly talking to her, singing at her, asking her questions, prompting, etc. We explained that sometimes she just has to BE with DD and not INTERACT with her. Let DD lead. Observe, Wait and Listen.

Think about it from DD's perspective. She's just a little one. She doesn't know how to express that she's getting overloaded. She also doesn't have the power to say, "Stop!"

[joensally]

If she's able to keep it together until bedtime I'd wonder if it's actually clinical SPD. DD does not have SPD but does have huge OEs. She can keep it together until we're away from social situations for the most part. DS has SPD and if he's gonna blow, he's gonna blow whatever the circumstances .

I'd also second the rec for Kurcinka's books. She is addressing the sensitive/OE/SPD continuum and has lots of good strategies.

If you can't get MIL to see it or believe it, it sounds like you need to devise strategies to give your DD relief. It sounds like she's just over-the-top by the end of the day, and it makes sense that a little person would lose it when she's tired, safe and just done. It's sort of like how an adult feels at the end of the day when they were at the mall christmas shopping, grocery shopping, got caught in traffic, made dinner and didn't get their own needs met. It doesn't need pathologizing or diagnosing, it makes sense as a human reaction.

ETA: this last line comes off as snitty, and that's not how I meant it. I've been reflecting a lot, and reading a lot, about how we're collectively making the range of "normal" so narrow that we almost all have "issues" of some kind or another. I think it's great that you're investigating with the aim of helping your DD, but it may just be in the range of her normal.

[Casha'sMommy]

Originally Posted by joensally

If she's able to keep it together until bedtime I'd wonder if it's actually clinical SPD. DD does not have SPD but does have huge OEs. She can keep it together until we're away from social situations for the most part. DS has SPD and if he's gonna blow, he's gonna blow whatever the circumstances .

I'd also second the rec for Kurcinka's books. She is addressing the sensitive/OE/SPD continuum and has lots of good strategies.

If you can't get MIL to see it or believe it, it sounds like you need to devise strategies to give your DD relief. It sounds like she's just over-the-top by the end of the day, and it makes sense that a little person would lose it when she's tired, safe and just done. It's sort of like how an adult feels at the end of the day when they were at the mall christmas shopping, grocery shopping, got caught in traffic, made dinner and didn't get their own needs met. It doesn't need pathologizing or diagnosing, it makes sense as a human reaction.

ETA: this last line comes off as snitty, and that's not how I meant it. I've been reflecting a lot, and reading a lot, about how we're collectively making the range of "normal" so narrow that we almost all have "issues" of some kind or another. I think it's great that you're investigating with the aim of helping your DD, but it may just be in the range of her normal.

fwiw, I didn't take the last line as snitty
I have been feeling, since I first posted about this in the gifted forum a couple years ago, that it was OE's. It just seems to be growing and she's much more of a handful so I'm wondering if there's something more. Why does she lose her mind when the soup has parsley in it instead of the soup we had the time before without parsley? Why does she get upset when the sandwich shop doesn't have the creamy tomato soup she loves? At the same time, she rarely gets upset when told 'no' and she's very well behaved. Sometimes she acts so much older than her age. Sometimes the things that come out of her mouth make my jaw drop.
It is largely sound that has been the "issue". At the same time dd refuses to wear jeans, will only wear dresses with tights/leggings. Jeans make her freak out. She won't allow me to take her picture anymore, she rearranges items at the store by color (her method of organization), her seat straps have to be done the "correct" way (btw, there is no actual definition to what correct is) and if we're in a hurry or running late she doesn't do well. If the bedtime routine is varried slightly dd does not sleep. This happens when we visit family. The last time we visited the il's house dd was up at 4:30/5:00 and absolutely would not nap and did not go to bed until well after 9. I about lost my mind. Some days she won't sleep without her comforter, even if it's 90 degress outside. Some days she won't sleep with anything more than a light blanket, even if it's 30 degrees out.
Sound had been the majority I thought all the other "stuff" was just her being a toddler/young child however, things just keep growing and it's so much.
I hate listing all her "faults" and "stuff". I try so hard to just see her as the child she is but the child she is is really an issue lately and I'm nervous of what the future brings.

[joensally]

I was just recommending this book on another thread and glanced at chapter 4, which you might find helpful:
http://books.google.com/books?id=kPt...page&q&f=false

Here's my .02 from parenting two gifted kids who are both somewhere high along the sensitivity continuum. LynnS6 recently posted a great description re sensory, normal to "abnormal" and hypo to hyper. All humans fit somewhere along these continuums. I was reading an article on the Eides' site about who/what they see at their clinic, and they were saying that sensory issues were less marked in the over-10s. They're not sure if it's because the kids have outgrown their sensitivities or because they've developed better coping strategies.

The other variable at play may be that she's 4. Four's often a challenging age. It's also an age where they don't much like incongruity, and some of her triggers sound like events that didn't play out as she'd expected. I have certainly heard, following a rigid thinking meltdown "but I didn't expect parsley!!!"

Another thing that some of this might be anxiety. Not the serious, need therapy kind necessarily, but anxiety can be managed through controlling environment or things (rituals, ordering things, being over bossy). Interestingly, sensory issues can also trigger anxiety and then the resulting management strategies (like ordering etc). Finally, this could also be personality + developing prefrontal cortex.

My son is an alphabet kid (multiple diagnoses), whereas DD only has one, although they are very similar in many respects. Many of the strategies we learned for DS have helped DD, so certainly reading up on SPD approaches, anxiety approaches (such as CBT) can only provide you with new strategies. I found Kurcinka's Kids, Parents and Power Struggles a very useful read - she is familiar with SPD and is GD. With DD, who has been very challenging and has found new depths of challenging behaviour as she nears her teens, is best addressed through meeting her sensory and anxiety needs, although she does not have either of those diagnoses.

[Casha'sMommy]

It's another bad day today. I could tell it was going to be this way from the moment dd got out of bed. *sigh*


Thanks so much for the book rec, much appreciated. I'll check my library.

You may have hit it right on the head re: anxiety. I think I'll take some time to educate myself further about that as well as a little more about development. I may just have "one of those kids". This, I fear, will only fuel mil's denial of the situation. But, first I must do a little more reading.

Thanks again.

[Emmeline II]

How does your dd sleep?
Does it take her a long time to get to sleep?
Is she a restless sleeper?

If she is not getting in enough or "good enough" sleep that could be impacting her behavior as well.

Ds used to take at least 40-60 minutes to get to sleep, but otherwise seemed a good sleeper. Since we started melatonin he is asleep 10 minutes after he lays down and I've seen an improvement in his mood.

[Casha'sMommy]

Originally Posted by Emmeline II

How does your dd sleep?
Does it take her a long time to get to sleep?
Is she a restless sleeper?

If she is not getting in enough or "good enough" sleep that could be impacting her behavior as well.

Ds used to take at least 40-60 minutes to get to sleep, but otherwise seemed a good sleeper. Since we started melatonin he is asleep 10 minutes after he lays down and I've seen an improvement in his mood.

She's an awesome sleeper. If she ever has trouble falling asleep she just looks at a book and within 15minutes or so she's out. Additionally, because of her hearing loss she isn't ever bothered by sounds at night so no thunder, baby crying, dog barking, etc ever wakes her. She has been an amazing sleeper since she was a baby and actually started sleeping through the night at 8 weeks and only woke for the occasional nurse here and there. That should have been my first signal, right?

My older ds is on meatonin and it helps him tremendously.
I, however, cannot take it. If I'm awaken before I've had some good sleep it's as if a monsterous beast has come to life in my place. It's not pretty.

[Casha'sMommy]

I am drinking a glass of wine and decompressing after my day from you know where.
The day wrapped as it opened, dd was in the worst mood. She was "twitchy" from the moment she got out of bed and that did not stop until she fell asleep about an hour and a half ago. Bath time was another screaming and kicking smack down and I always take the brunt of it. Truth be told, I'm tired. I'm very tired. I'm feeling a little less than successful as a mom today.

I'm trying to start a business that, it is my hope, will someday grow to a family business and provide all my children with a place to fall back on. How on earth am I going to do this? DD takes up so much of my day. I'm sitting here in tears after feeling very overwhelmed all day and having many outbursts from dd. I feel like I'm doing all the wrong things somehow.
This is exactly why I've started to question whether this is simply OE's or a matter of something a bit more.

Sorry to vent on you all. I'm just beyond frustrated tonight.