Tuesday, May 27, 2008

Experience wanted

I have a confession.

Lately, I've been quite reluctant to take KayTar out in public. We actually skipped out on a fun barbecue this weekend with friends from out of town that we rarely get to see, because we just didn't really want to run the risk of it being disastrous.

She's become quite the loose cannon and I'm never sure when she is going to roll down hill and explode. That coupled with the underlying language barrier and the way she screams, "HELP ME! DON'T TAKE ME! IT'S AN EMERGENCY!" any time I suggest something not to her liking, we might never leave the house again.

Of course I've been through difficult behavioral stages before with BubTar, but this is quite a different experience. I know to some, it sounds like run of the mill three-year-olditis, but it isn't quite that. That I can handle. That I have handled. This is not that. The biggest issue is that, honestly, I have very little control over KayTar when we are out, because I simply cannot reason with her. At home, we have routines that facilitate redirection, in public we don't have those same options. My only recourse is a dash to the door, hopefully before things descend in such a way that everyone in the general area is wondering whether or not I'm kidnapping my own child.

At home, if she gets worked up, we simply redirect her from whatever it is that has gotten her to that point. Even BubTar knows how to do it. If we can't simply redirect her, if she's really worked up, usually we have to remove her from the situation altogether. We move her to her bedroom, which is predictable and comfortable for her, and she calms herself down. We really don't have many issues at home or at other places she is very comfortable. Some of that is because she is less likely to be upset in comfortable settings and some of it is because we have different expectations. For example, we don't care if she happily shrieks repetitively at home or at my mom's house...but in the library, we can't really allow it. We also can't prevent it, which means we are making early exists (which is likely to elicit the "HELP ME! DON'T TAKE ME! IT'S AN EMERGENCY!" response system) or avoiding the situation entirely.

Here are a list of things that do not work:

If/then statements, positive or negative varieties. "If you do _______, then _______ will happen." or "If you are very quiet, then you can get a special treat!"

Any sort of delayed consequence. "When we get home, ______."

Most ACTUAL consequences. They typically require some sort of explanation which flies right over her wee head, OR they just make her scream louder and become more out of control.

Anyone have any brilliant ideas? Anyone with a special sort of kiddo been through this particular stage and found an effective way to navigate it? Help me, wise parenting gurus of the Internet!


She might be a handful, but dude, she's cute, isn't she?

33 comments:

Becca said...

No suggestions, but yup, she's very cute!! That sounds really difficult. I know you'll get some good advice here.

flutter said...

is is cute, but dang, Kyla I don't know what to tell you...

liv said...

i went through quite a time when i felt like i couldn't take D anywhere. it just takes time to work through, and the more it stresses you all out, the more the whole deal seems to escalate. (hugs)

Deb said...

When my youngest hit puberty at 11, things went to hell in a hand basket, violent attacks on me. We quit going anywhere for awhile and then put her on medication.

No advice, sorry. They are so good at embarrassing us, aren't they? I overheard a young woman at the YMCA awhile go yelling "Fuck Yes!" over and over and over again. I would assume Tourettes but I felt for her mom.

Good luck.

Gry said...

Very cute indeed! And feisty :)

Mine is about to turn two, and it's already getting bad. She isn't talking yet either, and pretends she doesn't understand when we tell her no, or try to reason with her. I still don't know how much she actually gets (we're a trilangual household), so I'm getting pretty frustrated.

That didn't help, did it? Heh, sorry!

cinnamon gurl said...

Sorry, no advice here either. I'm getting near to putting out a similar call to help with Swee'pea's bedtime.

Karen said...

oh Kyla, it was just like this for us when LP was like 2ish to 3ish (longer). Honestly, one summer I either stayed home, went to my in-laws, went to my best friends, went to one playground walking distance from the house. Nothing worked but the soothing routines of home and familiar spots. Even in-laws and best friends house were often miserable but I had to go some place. We did lots of staying in. I just held my breath and stayed the course. I was sad, lonely and tried to get out on my own more to see friends occasionally (weekend nap times, evenings)

Speech therapy helped more than anything. When he was 3 1/2 he started getting therapy for a very low receptive language score. Within weeks (and of course he was getting older too...) he understood more and some of things that you mentioned don't work, started to. We did lots of practice with "first sunscreen, then outside." "first clean up toys, then go in car" - all trying to keep it about stuff that didn't stress him out, routines he already had in place, so we could translate that to other things (like potty training: first pull down pants, then pee...first hold hands in parking lot, then play at playground) - things that were major meltdown material. Things are better now - but there are still places we don't go- or only go if both of us are going & I wouldn't dare try it on my own.
Wishing you lots of patience and courage too to get out there when and where you can. (we still never go to the library, though)

womaninawindow said...

gosh, ya, she's cute.

only thing I can suggest is to give yourself that allowance that YOU need. when things are out of control know it's not your fault...and to hell with anyone looking on disapprovingly.

Gratefully, my fitful one saves it ALL for home.

Kristin said...

I'm stumped, but dude...she's the cutest! What a great little expression!

I know you're not getting to go to any therapies right now, but out of the goodness of their hearts, could you call anyone who KNOWS KayTar and how she is for advice at all? For free?

amanda said...

She's gorgeous...

We took Sophie (autistic, pdd fairy god child) out but with a low threshold to leave. More than I care ot admit, I have carried her out of a public place with Sof screaming "Don't touch my body!!!!!!!!". We just hope for understanding from those around us. We have had to avoid places that overstimulate her and the library. Outings to people's houses are always prefaced with we may need to run out if Sof gets in a state...

Queen Mommy said...

It sounds counter intuitive and crazy, but try yelling with her?! The best book I ever purchased is "The Happiest Toddler on the Block." The author is a pediatrician and outlines how toddler's are similar to cave men. It is awesome!

Anonymous said...

We hosted a party Saturday, and my girlfriend warned me ahead of time that if her little guy had a meltdown they would be off to the car without much of a goodbye. When that happened I wasn't surprised and could vaguely explain to our other guests. So my advice would be to forewarn other people as much as you can. And a question- does it help to frontload KayTar? I mean, if you tell her where you are going, what will be going on, and how you expect her to act, would it help?

Jill

Julie Pippert said...

Kyla, you just listed my parenting tools. I'm stymied.

But I'm not done.

1. You guys are welcome here any time and I can do whatever we can to set up my house so it is friendly to what you need for Kaytar now, and we can set me and the kids up to understand you might need to go.

2. I will gladly meet you at some kid spots. I can stick with Bub and the kids if you need to run off with Kaytar. I can herd them behind you to the car, as well. Do whatever behind you that you need so you can focus on Kaytar.

3. I will gladly try to broadcast this question in any channels I have to see if there are any ideas out there if you like.

Mia C said...

I will admit for awhile, I stopped taking C out. He went to school, he went to therapy, he went to grandparents houses and that was it. This went on for some time, maybe a year. I was in the store buying groceries at 10 pm, because that was when my DH was home.
It has gotten better and he has gotten better, but it has been a long road.
1. I made buzz off cards. Since C has autism, they were a "you've just encountered someone with autism" and some info on autism. For Kaytar, maybe "I have developmental delays, please be patient while I work on my social skills:)"
2. We had to start doing social stories and prep work for everywhere we went. He has a visual schedule he can hold- pecs- and that way no surprises. We talk at bedtime about where we are going the next day. BEFORE ANYONE exits the car to go into a place, we go over (very simply) what we are doing and what is expected. Like you, if he misbehaves we leave. But sometimes because he is overwhelmed, that is what he wants. So I pay close attention to the signs of impending doom. C will lie down in the floor, and boy, do I rush him out!
I would stop taking her places for awhile. This is hard- some people would say, well, you can't stop your whole life, but sometimes with kids like these, you do what you have to do.
3. The other thing I would suggest is to give her choices. C often feels so much better when he thinks he has some control- you can walk or be carried (he hates to be carried), you can hold my hand or the cart, etc.
I feel you on the out of control thing, it is just awful. When redirect doesn't work, I move to choices, but sometimes even that doesn't prevent the meltdown. Age 4 for us is better than age 3 in most respects, except for his running off and lack of a sense of danger.

~aj~ said...

Kyla, I'm totally clueless. I know it is probably not funny in the moment, but the fact that she yells "This is an emergency!" made me laugh out loud!

ALM said...

This past weekend I invited my parents to join my boyfriend and his family at his sister's pool club. My parents did not want to go because they did not want to bring my brother. Who has Down's Syndrome. It's not the fact that he has Down's, but he has accidents & has to be rushed to the bathroom. They didn't want the attention drawn to him, to them, to my boyfriend's family, etc, etc.

In the end they brought him, and it was fine - but they were nervous throughout.
It must be that much more difficult because she does not look "different." At least with my brother people look at him and have a different set of expectations.

I think, honestly, as difficult as it is you have to do it. Just small steps... so it's not too overwhelming for any of you... Maybe build up a resistance for all of you? I don't know. Just an idea....

Mia C said...

Ooooh. I thought of one more thing re: the scripting. Almost everything C says is scripted to some extent. he just modifies it to fit the situation.
Is Kaytar amenable to changing her script? If she picks up new ones easily, I would have BubTar and you and Daddy act out her "new script" for tantrums. This may take a good week or so. If she is going to pitch a fit, I'd give her new words for it, ones that loudly include "mommy" so no one thinks you are kidnapping her. "I am so mad at you mommy", etc.
If she sees her brother do it convincingly and then she gets a shot at it, maybe you could rewrite those particular lines. then when she is mad she will have appropriate words she can modify for other situations. She will probably pick up on it if you remind her of the new script, even in the midst of a meltdown.

What can you do, they love their rituals. C repeatedly is doing things he shouldn't and then asking, "Do you need to go timeout?" Like you wouldn't believe, buddy. Mommy needs her timeout with a pitcher of margaritas:)

Just Me said...

I'm an OT and I also am bipolar and for me that is accompanied by fairly severe sensory integration issues. It's an autonomic nervous system dysfunction that a lot of the time is more bothersome to me than my moods.

I gathered a lot of education in sensory integration over the years because I thought it was interesting, although not commonly used with the patients I have treated.

I started using it with mentally ill patients about 3-4 years ago with incredible success. One patient came off his narcotics after only a week of treatment. His doctor was shocked as he'd been out of control for years.

Finally 2 years ago I had an episode that made me feel like I was going to explode if I had to be out of my house. Every noise was thousands of times louder. I had to wear industrial earplugs to sit in the waiting room for my therapist. I was spending hours hiding in my unfinished basement on a cot whenever a neighbor mowed (constant) or played music or even a neighbor kid was outside, even with my windows shut.

I finally realized no meds were going to reduce the overstimulation and that I couldn't stay shut up in the basement (and I"m terrified of basements) forever. So I bought a weighted blanket.

For the first time in 30 years I became able to lay down and sleep. I became able to self-soothe for the first time in my whole life. I have NEVER spent better money.

My first one was pretty generic, from a medical supply catalog. It didn't clean well and didn't hold enough weight and the weight could have been better distributed. So I got a custom made one for Christmas. I even got to pick the fabric, a soft one generally used for baby blankets that I also find calming.

Weighted vests are also available for kids. That's what I'd suggest as a first option, see if she benefits from having it on in public to reduce stimuli. I can say for sure it feels oh-so-good if you have the kind of agitation it sounds like she's experiencing, a panic due to overstimulation.

You can find people who make these, and I think even patterns, online. Or you can email me and I'll look up where mine came from, although I will say we had to kind of pester to get it 6 weeks late.

motherbumper said...

Oh boy - wish I had something to pull out of my parenting bag but I don't. But I can say that she is damn cute - I mean DAMN cute.

jen said...

dude, i've got nothing. i lose these sorts of battles every single day.

carrie said...

I swear, it's a girl thing.

It's also a half-birthday thing. A few weeks ago Katie was on my last nerve for days . . . then I remembered that nugget of wisdom passed down by our old co-op preschool parent educator about the half birthdays being important developmental milestones.

Developmental milestones = irrational behavior!

Viola! There you have it. She may be on the cusp of something big . . . :)

AJsMom said...

In the meantime, don't isolate yourself completely. You know plenty of people who are familiar with Kaytar's situation and would probably be amenable to coming to visit you on YOUR turf. That way Kaytar is surrounded by her things and may be more comfortable.

PJ said...

She's absolutely beautiful...and that's a cute picture. Hmmm. Haven't any immediate ideas. I'll give it some thought. From what I've seen with your ingenuity and insight, you'll think of something long before I will!! In spite of my advanced age and degrees. Something about that Mom sense that God put there will work for you. Prayers!

Aliki2006 said...

We do a lot of prep work BEFORE we go somewhere. We make schedules for L. on the weekend, so he can process the progression of events. If we're just lounging around the house we don't make a schedule, obviously, but if something different is happening--like we're going to a party or an event, we put it in. He is VERY rigid about routines. Of course sometimes unexpected things crop up-- like what happened with that bad haircut experience I wrote about last week. So you can prepare, but sometimes it isn't enough!

slouching mom said...

oh, kyla, that sounds rough.

i think only time will help. this phase will pass, promise.

Jenny, the Bloggess said...

I wish I knew. I guess I'd just say hang out with people who are cool with anything. Hailey had this stage where she threw up without warning CONSTANTLY and I would have to catch it IN MY HAND and then run away. We ended up avoiding public places for a long time and only hung out with people who would understand.

PS. I understand. Kaytar is always welcome for some repetitive screaming at my house.

Anonymous said...

If you figure it out, let me know! Julia and that strong willed personality of hers can be quite similar. Mostly it is much better, but there are still times when we have to leave the store, sometimes right after we got there.

And what an adorable pic of Kaytar!

Amy

Anonymous said...

Hi, I think the other suggestions about preparing her for where you're going, how long you'll be there, etc. are good. Give her a visual schedule so she knows what's next, maybe? I make my own, very low tech, using 99 cent photo albums and I put in pictures of where we're going along with 3x5 cards with writing.

I wouldn't stop going out with her entirely, but set up short trips that you can use to practice and ultimately to navigate successfully, and not always to a "fun" place.

And based on personal experience, I suggest carrying some info with you whenever you go out with her: a copy of her birth certificate, your ID and a photo of the both of you, maybe an ID bracelet on her? So if you are stopped because she is screaming, you can prove that you *are* her mother. I was stopped once when I had to carry my screaming non-verbal toddler home once from a walk.

Victoria

angiesarman said...

Wow Kyla, what you are dealing with Kaytar sounds exactly like what I go through with John John. I can't reason with him, he doesn't understand.
I even have friends that try to reason with him, thinking it will work for them, I have to remind him he really does not understand what you are saying.
Thankfully, he doesn't play the 'emergency card' on my because he can't even say emergency, LOL.
Good Luck, just know that I understand what you are going through, as far as that goes. :)
Luv ya!

Redneck Mommy said...

Girl, I feel your pain.

I know your pain.

The only thing I can suggest is a time out in a vehicle (noise can be contained) when she acts out. Sit with her until the melt down is over, try redirecting her actions in a quiet space with mommy.

Gah.

This sucks, doesn't it?

So tell me, why am I so desperate to do it all over again????

Tierd said...

People in public may be more understanding than you realize. And if they aren't ... screw 'em. I know that is easier said than done. Jen

kittenpie said...

She sure is cute...

my only suggestions are things you are probably doing already or things that might not break through with her, but for what it's worth:
-I find pre-loading with information about what we will see and do and so on helps enormously, as well as setting my expectations of her in advance. I then stick to what I told her we'd be doing like a person possessed.
- I have also been working on helping her calm herself with deep breaths to get her emotions under control. This means now she tells me she needs them and we do them together, so far, though I am trying to teach her to do it herself!

Hope it might be some help, but gad, soemtimes the phases, they must just be ridden out painfully, right? No fun.

whizkidforte said...

I agree with Mia C on the visual schedules, social stories, and choices that would quell and prevent some further meltdowns! Here's a good link for a how-to:

http://www.autismkidzstore.com/articles/tantrums.htm