sylvia is deteriorating

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Registered: 03-31-2003
sylvia is deteriorating
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Wed, 02-15-2006 - 1:52pm

I am really at a loss here. I have no idea what's going on with Sylvia, and I have no idea how to help her. Her anxiety and meltdowns are as bad as they've been in at least a year. I've been trying to develop some kind of sensory diet to help her, and in all honesty, it appears to be making things worse. I'll notice her starting to lose it first thing in the morning, so I'll do activities that have proved calming and organizing in the past: I'll let her jump on the trampoline, invert her so she's upside down for a while, have her push on the wall or stomp her feet, etc. She's very happy while we're doing the activities, but as soon as we stop (with plenty of notice) in order to put on her coat and wait for the bus, she completely disintegrates in tears. And because of her recent, sudden hypersensitivity, as soon as she feels the wetness on her cheeks and eyes from the tears, she disintegrates even more, can't stop crying, frantically tries to wipe the tears away but because she can't stop crying she can't get herself dry... This happened yesterday morning as well as this morning, plus it happened at lunch today. She literally cried throughout lunch, and has been crying since. Nothing I do seems to help: I kind of "swaddled" her in her bed, tried to do calming exercises with her, gave her big bear hugs... very little worked, and even if she stopped crying momentarily, within a few minutes she started crying again. She's up in her room now, alone, periodically bursting into fresh tears, because I just couldn't be in there anymore -- my own emotional state is so fragile and I didn't want to start crying myself, which I'm sure would make things exponentially worse.

I just have no idea what's caused this sudden intense anxiety and sensitivity, and I have absolutely no idea what to do. She was sick at the end of January / beginning of February -- could she still be suffering from fallout from that??? How long do I wait before I start to get seriously alarmed? Her sleep schedule is all out of whack, so I'm sure she's overtired, but why is her sleep schedule out of whack?

Plus, she's been eating so much GARBAGE at school. They don't eat their snack until 10:50am, and she has her breakfast at 7:30am, so she's starving at snacktime... and she gorges on Doritos, cookies, cheese balls... stuff I NEVER give her at home. Plus lately, with Valentine's Day, they've been eating candy, giant cupcakes with frosting, and enormous frosted cookies. I've had discussions with the teacher about how Sylvia's mood is much more stable when she eats healthy food, and I send in things like applesauce, cheese, etc. -- but what they do is serve the healthy food alongside all the garbage, and if you were a kid and had a choice between Oreos and applesauce, which would you pick? Yesterday the teacher called me and said, "Boy, today we really saw what you mean about the sugar... Sylvia seemed addicted, she couldn't stop herself from eating the sweet stuff, she just kept compulsively grabbing it." Then the teacher told me they "cut Sylvia off" after half a GIANT cupcake -- but then let her have a huge frosted cookie. And after Sylvia rejected the applesauce they offered her, they let her have Doritos. So of course she comes home completely stuffed full of processed, nutritionally void crap, and doesn't want to eat lunch. I'm positive this is having a bad effect on her, but it doesn't seem like they have the ability (or desire?) to control how much she's eating at snacktime. The teacher assured me that normally they don't have that much sugar at snacktime, but even if she's eating Doritos, it's still garbage, and I know that I myself don't feel well when all I'm eating is garbage.

So I have no idea how much of a stink to make about the snack situation. Do you think that this could seriously be having a detrimental effect on her? Or should I concentrate on the sensory stuff itself -- tomorrow I'm being trained in brushing and joint compression, should I see how that works before I go all crazy about the snacks? Is there anything else I'm missing -- some other reason Sylvia might be suffering so much right now??? One other thing: while Sylvia has been a bit more emotional at school, she hasn't really been displaying much hypersensitivity there -- that seems to all come out at home. So as a result, none of the teachers or therapists have noticed anything wrong, and seem perplexed when I try to tell them how bad things have been lately. So I really feel like I'm on my own with this, and I feel kind of abandoned -- I thought that the point of having trained teachers and therapists was that they'd be able to tell me what to do to help her, you know? So... does anyone here have any ideas? I could really use them -- I'm falling apart here...

Jennifer

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Registered: 03-26-2003
Wed, 02-15-2006 - 2:15pm

wow jennifer, i'm so sorry that is going on. i would be really perturbed at school. if she was on a gluten free diet they wouldn't allow her to eat that stuff! i would bet that her behavior is influenced by the change in food she is having that she is not use to.

you could put your foot down and say that she is on a restricted diet and that she is only allowed to have the snack that you send in for her on a daily basis. only problem with that is her feeling left out from the other kids.

feel free to call me tonight if you want to talk about it. valerie

~Valerie
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Registered: 08-26-2005
Wed, 02-15-2006 - 3:19pm
Jennifer, I'm in the same boat as you here with Jake. Over the last month he is like a different child. He is usually so cooperative but right now he's having meltdown after meltdown. I too have tried uping all the sensry stuff and just purchased a trampoline yesterday. My OT suggested having him push heavy objects around in a shopping cart which seems to have helped. Last week I tried brushing him again which never worked for him in the past and all it did was rev him up even more because instead of brushing him slowly and deeply I brushed him quickly, BIG MISTAKE!I'm just at my wits end because none of the therapists seem to understand what's going on with him and neither do I. In the past he sometimes got very anxious like he is right now when he was taking a leap in development. He has begun to spell words and his language is increasing so I'm hoping that's what it is. It really takes a toll on you after a while and my patience is starting to wear thin because he usually is the easy going one and Ella is the one who has all the tantrums.
Teresa
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Registered: 03-27-2003
Wed, 02-15-2006 - 4:28pm

It's so hard when our kids have a regression. You feel like you're on top of everything and then they seem to back slide and you have to start all over! She could be keeping it together all day at school and then just explode when she gets home because she can't take it anymore.

Sam always regresses at this time of year. I think it has something to do with being stuck inside, some kind of allergy and all the seasonal colds. He also just got over strep and everytime he goes on antibiotics he gets all messed up. She wasn't on antibiotics recently was she? That throws off the balance of good/bad bacteria in the intestines. As everything gets back to normal the bad bacteria die off and create by products that mess with the brain. Plus those bad bacteria really like the sweet stuff and want to live! That could explain the sudden cravings. I try to get Sam to eat yogurt daily; that helps a lot.

I personally would make a big stink about the food issue if she is reacting so badly to the junk. I know that she may feel left out, but her behavior isn't making her interact well with the other kids anyway and that isolates her in a way too. Plus there are lots of other better choices in "junk" food that you could provide once in awhile. The Newman's Own products are good, no dyes or preservatives. And there are a natural line of Doritos without dyes. Our DS is on a preservative/dye free diet. I do allow him to cheat a little during school parties. I do not let him have school lunch or breakfast though. We get lots of safer kid type food from Whole foods, yogurt tubes, "jello" cups, cookies, cereals.

I think sometimes Sam just regresses because that's part of ASDs. When he's having trouble with behavior his reading and learning seem to be going well. When he's struggling academically his behavior is great......it's a weird cycle. Just this year, I've come to the conclusion that it'll probably always be this way. Maybe the cycle will lengthen so the regression happens less often. This last bout has been easier because I remember last year and the year before that and how we came through it OK and how Sam seemed to gain some kind of new skill at the end of it all. Though, it's still not a piece of cake!

Taking it one day at a time seems to help me. And having some quiet cuddle time with Sam at bedtime, regardless of what kind of day it has been, seems to help Sam and us stay connected.

(((big hugs))))

Chrystee

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Wed, 02-15-2006 - 6:09pm

I was just telling Cait's teacher about this in an email. Suddenly I started getting emails how Cait is having a hard time staying focused, not turning in work, being oppositional and it dawns on me that it is February.

The second half of the school year, right around jan/feb, cait has ALWAYS had a problem since she was a toddler. I honestly think it is related alot to sensory stuff and the weather. The days have been shorter for a while. They have been having loads of changes and junk food over the last few months starting in october and continuing until now. It is colder and they can't get outside as much and after a long enough time of it things slowly deteriorate.

Mike is in a downslope too. His teacher is the one who put it in perspective today. He has ups and downs but it is still up from last year. He is going to have some regressions and some things will need to be retaught but overall he is still making progress from where he was and to reteach the skills will take a shorter amount of time.

Renee

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Wed, 02-15-2006 - 7:24pm
What kind of preschool does she go to that they are givng her all that crap?

 


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Wed, 02-15-2006 - 7:33pm

It's so interesting for me to hear all of this... I remember someone saying in a post a few weeks back that her child always had increased sensory issues in Jan/Feb... but I guess I just didn't know it would be so dramatic. Sylvia literally cried from noon until 2pm, when she fell into an exhausted sleep. I woke her at 3:15 (so she wouldn't be up all hours tonight), and within 10 minutes of waking up she was crying again, and she cried until almost 5pm. At 4pm I called DH who came home from work early, because I was so worried about her, and because I was about to lose it. It took him an hour, but he managed to calm her down, and she ate a nice healthy dinner. We're pretty sure that she's not sick -- once she did calm down, she played normally, seemed happy and energetic. She's up in bed now, doing fine, but her eyes look HORRIBLE: she's so freaked out about the wetness of her tears that she was rubbing at her eyes all day long with a tissue, and now the skin around her eyes is completely red and raw -- almost like she has two shiners.

Tomorrow I have an appointment with the OT, first thing, to learn the brushing protocol and joint compression. I'll also ask her about other activities we can do at home with Sylvia, and talk to her about asking for more OT on her IEP. And while I'm at school, I'll have another talk with the teacher about the junk food. I am very happy to supply as many healthy snacks as they need -- it just seems that as long as they offer the junk food alongside the healthy snacks, Sylvia is always going to go for the junk. So they need to drastically limit the junk she eats and steer her toward the healthy stuff. I doubt that the junk food is the cause of all this, but it certainly isn't helping.

This has been such, such a challenging couple of months -- for many of us, it seems. But I guess that every day of winter brings us closer to spring...

Jennifer

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Registered: 03-31-2003
Wed, 02-15-2006 - 7:39pm

She's in a special ed class: 12 spec ed students, 1 spec ed teacher and a classroom aide. It's the other parents who are sending in all the crap -- the school doens't provide snacks, so the teachers just serve what the parents send in. But I do think that the teachers have a responsibility to make sure that the kids aren't completely stuffing their faces, especially when I did mention before that Sylvia seems to have a problem with sugar and processed foods...

I have to say that I am astounded that none of the other kids have problems with this kind of food! And Valentine's Day was out of hand -- Sylvie came home with a bag of candy along with her valentines... and the candy was from the other kids!!! Yesterday and today Sylvia was asking for candy for lunch -- this from a girl who normally eats whole grain bread, natural peanut butter, and fruit for lunch!

Jennifer

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Registered: 06-25-2003
Wed, 02-15-2006 - 11:14pm

Jenny,

I am sorry you are going through this. Peter is exibhiting some regressive behaviours. He often does at this time of year.

I did have a thought, reading your post. The sensory activities you have been doing with Sylvia are for the most part, exilarating. I wonder if trying some more calming activiies might work?

I know the exilarating acytivities have worked in the past, but something seem to have changes, and I am thinking that in her key-ed up state, the activating stuff is revving her up a little too much?

Try changing tack: Perhaps a weighted toy or lap pad for her to sit with, or have her carry a weighted backpack for about 10 minutes? Also, an activity which worked for calming Peter: Deep massage. We read the book "Pete's a pizza" which describes a great sensory activity. Making *my* Pete into a pizza was an activity which really helped to calm him. It saved my bacon on a few occasions -most notably during a stopover in Cleveland airport. Ask the OT for some pointers.

((((hugs))))

I hope this helps.

-Paula

-Paula

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Registered: 03-26-2003
Wed, 02-15-2006 - 11:23pm

Jennifer,

In a situation where she got that bad I would likely give her tylenol incase there was pain somewhere. It is possible that it started as sensory but she got herself a big headache quick.

A friend of mine swears by "Rescue Remedy". It is a homeopathic drops. And you put about 4 drops or so in her drink and you don't notice it is there. That is one thing that helps my kids pretty quickly turn it around. Another is chamomile helps to calm them.

That sounds like a horrible afternoon. I am so sorry.

Renee

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Thu, 02-16-2006 - 6:44am

Paula,

Just last night I was saying to DH that I suspected the activities I was doing with Sylvia were making things worse, not better, so I think you're probably right. Sylvia's teacher told me to ask the OT if I could borrow a weighted blanket and compression vest from the school for a few days, to see if they seem beneficial to Sylvia before I go out and buy them. The activities you mentioned also sound like they'd be a huge help, and I'll definitely ask the OT for pointers this morning. Thank you so much!

Jennifer

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