Behavior Challenge Thread

[saveaquarter]

Saveaquarter.

Thank you so much for checking in. Adjusting to a baby much less 2 is huge anyway. Add to that worrying about DH and his issues, you've got a lot on your plate. It sounds like you are doing an awesome job. And I'm sure it's hard to watch J go through this. I don't have any advice, but I do send warm wishes and hugs. Sometimes life just throws things at you. All you can do is what you think is best at the time.

-A

Thank you. That means a lot to both of us

I just want to echo what C&G'sMama said. Saveaquarter, to be going through all that you are and then offer advice to me is just beyond giving! I really appreciate it. I don't know what advice to give on the life changing diagnosis, I'm kinda going through the same here.

And I know we are all going through "stuff" right now with the start of school, etc. My dd has been literally! climbing the walls, rolling around, unable to sit still or make any eye contact at all. I guess it is the psychological stress of the impending "First day of school". Although she's not verbalizing about it so I'm really just guessing.

It is very frustrating to me, as I have verbalized here, that my dd lacks the ability to express to me how she feels. I know she has feelings-I've seen her well up, but instead of knowing she's touched she remarks "that makes my eyes drip". I guess once I tackle some of these Basket #1 (safety, non negotiable behavior) issues I'll try to incorporate some exercises geared towards recognizing emotional states. I feel I could be helpful to her if I just knew WHAT the issue really was.

Anyway, tomorrow's the BIG day for us! I am really hoping all goes well! I have great confidence in this teacher after speaking with him on Friday!

DisDreaminMom, hope your kids are feeling better!

Thank you! And I really hope you can make a breakthrough with communicating with your daughter. One thing to keep in mind is that with those on the spectrum, it's never one issue that's upsetting them, there's always a buildup of other things. Where neurotypical children (and adults, for that matter) may be able to shrug off lesser issues, or just sleep on it and feel better, spectrum folks can't. Everything hangs around until it's just too much. J has a hard time communicating at all when he's completely overloaded, but with enough reflection on the past few days, to really look at what's been going on, I can usually come up with enough things that have gone wrong to discuss that he can lead the way through the rest.

Hey Saveaquarter,
Nice to hear from you! Glad babies are well. Sounds like you've got your hands full. As for diet thing, I've started watching this show on BBC America called "You Are What You Eat". It's addicting. It takes people with unhealthy eating habits (mostly overweight folks) and they have a holistic nutritionist make meal changes for them and show them WHY the food they have been eating is terrible for them. It was the best thing for me to get my brain wrapped around how much I was failing myself and my kids with our poor diet choices. We are not exactly junk food junkies, but we were not anywhere near where we could/should be in having a healthy diet. It's easy to read about why you should change, but seeing how it affects you is a huge motivator for me.

Good news is that because my son LOVES soup, I've begun making these crazy soups that have tons of veggies in them. If I chop the veggies up into a tiny dice, he never notices. I did one soup with tomatoes, squash (green and yellow), onions, kidney beans, potatoes, spinach and parsley and it was a huge hit. My son has eaten soup for at least one meal for the last three weeks. Potato soup is another super easy one to make, and it's very filling. We've also rediscovered rice.

I've virtually eliminated bread from the house, but some chips are OK. We're all eating more fruit and whole grains (but no wheat!). I go to the store more often and have been in the kitchen more BUT I've lost 10 pounds and I feel much better. Kids are slowly losing the spare tires. I'm trying to eliminate milk from the fridge, but working on that more slowly. I've been making fresh squeezed juices and serving water and ignoring the protests, though it's gotten much better lately.

I had a dinner party Friday and we had a cookout. I had hot dogs, and nothing but veggies (corn, grilled squash, green beans, tomatoes, and guacamole). The kids were fighting over the green beans. Someone brought cupcakes and my kids ate some of theirs (I didn't want it to make it into a power struggle) and my DS ate some of his and then asked me to make him a fruit smoothie. He never even asked for the rest of the cup cake, even though I put it on the kitchen counter for him. I threw it away this AM.

Yeah, change is hard on people who really like routine, but it just takes a few days in a row of a new habit to create a routine. I would say my husband is the whiniest one in the bunch. But even he feels better, so he's stopped complaining as much, too.

It's both resistance to routine and something deeper that we're struggling with. I didn't clarify, but another big issue is that J literally cannot digest anything that doesn't contain enough starch, and will get very ill. If you know any good recipes for potato soup, that would be wonderful, though

Congrats on the weight loss!

 

[GraceLuvsWDW]

Hey guys!

I need help...

Before school started I talked to the Autism Leader, the principal, and my dd's teacher about her chewy necklace. They all said "it wouldn't be a problem". Today they took it away from her. How to deal with this?

I thought about making a note for her pocket that she could show to anyone who told her to take it off. Something that says something like: I chew to help me alleviate stress, anxiety and provide an outlet for my need to move. Please allow me to keep my chewy necklace on!

That seems like it might work??? What would you do? I know the IEP is just around the corner but my dd freaks at the thought of even a few weeks without her chewy. She chews constantly and will chew her clothes or hands (germs!) if she doesn't have the necklace.

Thanks!

 

[KirstenB]

Hey guys!

I need help...

Before school started I talked to the Autism Leader, the principal, and my dd's teacher about her chewy necklace. They all said "it wouldn't be a problem". Today they took it away from her. How to deal with this?

I thought about making a note for her pocket that she could show to anyone who told her to take it off. Something that says something like: I chew to help me alleviate stress, anxiety and provide an outlet for my need to move. Please allow me to keep my chewy necklace on!

That seems like it might work??? What would you do? I know the IEP is just around the corner but my dd freaks at the thought of even a few weeks without her chewy. She chews constantly and will chew her clothes or hands (germs!) if she doesn't have the necklace.

Thanks!

Wow, just wow!!!! Does the autism leader not know that chewing is a huge issue for our kids??? I thought Zoe was the only one who did this and about a year ago or so, many parents of ASD kids here talked about their kids chewing on their shirt sleeves, and ruining their clothes etc.

This is a hill I would die on, if I were you. We're trying to transition Zoe from a binky to a chewy tube. If really provoked, and there is no chewy available, she'll chew on railings, bookcases, her own hand, etc.

I would ask them nicely, what is behind their decision? No matter what, I would say at a minimum, her chewy necklace should be available in her backpack or cubby if needed.

 

[C&G'sMama]

Oh Good Lord!!

Time to bring out your notebook. "While I realize the IEP is not in place yet, we do have a diagnosis, and as we all discussed and agreed on such and such a date, it is in everyone's best interest that DD has her chewy necklace". Like Kristen B. said find out why. My daughter isn't on the spectrum but was diagnosed with a mild form of PICA when she was younger. She always had holes in her sleeves, at 2 she chewed a hunk of a the foam handle off the stroller, the top off her toy teapot etc. DS used to come home with his shirts soaking wet in Kindergarten and I assume this will start again this year.

I digress. Again, don't go in with emotion, go in with facts. And then come here and vent.

Good Luck.

 

[BeckyScott]

A couple of things could have gone wrong, but you'll need to go to the school to fix them.

It's possible that someone besides the principal/autism specialist/teacher is the one that took the chewy away. Someone who didn't know.

It's possible that they forgot talking to you. Or one of them forgot, took it away, and the other two didn't know it got taken away.

It's possible (although from your posts about your DD sounds unlikely) that she was doing something with it she shouldn't. Like flinging it around.

If you confront them, they are going to try to come up with some legitimate excuse as to why it happened, so be prepared. They will try to cover their butts at any cost.

Kirsten says "a hill I would die on". I agree. But just wanted to add in there, I am soooo tired of hills I would die on. And I'm pretty picky about the hills anymore. Just wanted to throw out a group hug to all of us that have to make those decisions all the time. I don't know about the rest of you, but it's tiring and hard.

This is what I'd do, for what it's worth. Go up there and find one of 'em. Ask what happened with the chewy, and listen to the lame explanation you're going to get. Tell them it isn't optional, and you have to have the attitude (and I believe they can tell) that this is indeed a hill you're willing to die on, and that you have no intention of leaving until it's worked out (yes it is possible to pull the teacher out of the room for a few minutes, and if the autism specialist or principal isn't in the building, trust me they have a cell phone on them and can be reached). If he/she balks or denies telling you, imply that you'll go over their head on it. When he/she does agree to it, have them put it in writing right there on the spot, just a hand-written note. Then tell the autism specialist that you want the IEP meeting moved up to ASAP, that there are obviously some problems only one day into the school year, and that you're available on (insert day).

I think they're feeling you out on it. So you might as well go ahead and become a Problem Parent. (you're not even close yet, wink wink)

Did they send the chewie home with her at the end of the day? Usually when kids get stuff taken away like that, at the end of the day the teacher hands it to the parent to take home. What did they do with the chewie? Did they say anything?

 

[GraceLuvsWDW]

Update:

Well, yesterday I sent her to school with a note in her pocket. Have you seen the stick figure kids that talk about Sensory isues? They say "Do you know me? I am a Sensational Kid!" and it explains why she chews among other things. I also sent a note to the teacher explaining Asperger's. Yesterday my dd stated no one tried to take her chewy necklace away!

Today, upon taking my dd to school, I met up with her teacher in the hallway. He said "Thanks a lot for giving me that info. When I took it away it was because she was chewing instead of answering me. But now I know there's other factors involved."

So, this turned out quite well and I didn't have to ruffle any feathers too bad. And my dd is doing so well! She's really liking school!
Thanks for all the advice!

 

[KirstenB]

Grace, I'm so glad this was resolved so smoothly. I was all Mama Bear, and I've never even met your daughter!! Great news about school going well too.

I don't think I've seen the sensory stick figure kids you're talking about. Could you tell me where you found them?

 

[GraceLuvsWDW]

I received it in a package when I ordered chewy necklaces from sensory critters online. I think it is originally done by Canada SPD group??? Can I post it here? It is a public website so let me know if I've violated anything by posting this link. Here is the link:

http://www.spdcanada.org/images/uploads/DoYouKnowMe-Educators.pdf

I love this page! It is such as good way to teach kids (and teachers) about my dd's issues.

 

[DisDreaminMom]

Grace has a big fat fairy Godmother

Kristin B and Becky need a VACATION! SO do I. I think I have the nasty flu again. Want to shoot myself in the head so the pain stops. Almost woke up DH to take me to emergency room because my asthma was so bad. This is a doozy. And still no real fever. Kids are better though, except DD who is having same asthma issues as I am. TOns of schools in area have Swine Flu.

Saveaqarter, is it true that DH must eat starch? That sounds like the most wonderful dietary requirement in the world to have. Everything with starch tastes good! OMG. We eat our weight in potatoes every week around here. I'll fish out some recipes and PM them to you tomorrow. You could totally use Rice Flour and Potato flour to replace tons of things in your baking repertoire. Easy cheesy. What CAN he have and what CAN't he have?

School still good for DS. Loving the new teacher this year so far. She wrote extra instructions on a homework sheet he had, because I think she gets the whole Literal thing.

DD is in Gifted this year and helping her with homework is making me feel super stupid in the math department. I just hate math. Couldn't remember how to subtract fractions without common denominators and then had nightmares about it.

 

[BeckyScott]

Kristin B and Becky need a VACATION! SO do I. I think I have the nasty flu again.

What??? Do I seem extra tense??? (I wish there was a smilie of someone twitching)

We eat a ton of potatoes too. The newest phase is the fried potato. Not french fries, but slice em and fry em. Nothing like giving your kids grease for dinner. (I say it's a vegetable cause it's vegetable oil)

School here doesn't start until after Labor Day. Just today we're getting oldest DS's schedule figured out-- since he's in middle school this year there is a bit of coordination about what class what time. A new adventure, but I think what we have in place is going to work very well for him.

I used to hate math too. But now at work I need to know it all the time. I learned more there than I ever did at school. Unfortunately, the kids seem to think I don't know what I'm doing. That was a big source of problems last year with oldest DS, me trying to help him with his math and him telling me I was wrong. Dang it, I wasn't wrong. Ugh. Kids. Fortunately, this year he'll be going into a special math class (still regular curriculum but smaller) but hopefully he can get more done in class and not have as much homework, so I don't have to deal with Mr. Cranky-Pants. Anyway, I can "tutor" you all the way up to beginning Algebra. I even understand integers.

 

[KirstenB]

Grace, thanks for that template. I may need to pull it out if Zoe mainstreams into classes when she gets a little older. I like the way they broke it out into concrete examples.

DisDreamin Mom, I don't need a vacation, I prefer to think of it as vigilant, like a Marine Sentry!!! I can't imagine having the flu and having to coach our older dd on math, agghhh!!! I hope you feel better soon. On CNN, they were saying many areas of the country were already recording a lot of flu cases.

 

[saveaquarter]

Saveaqarter, is it true that DH must eat starch? That sounds like the most wonderful dietary requirement in the world to have. Everything with starch tastes good! OMG. We eat our weight in potatoes every week around here. I'll fish out some recipes and PM them to you tomorrow. You could totally use Rice Flour and Potato flour to replace tons of things in your baking repertoire. Easy cheesy. What CAN he have and what CAN't he have?

It's not so much that he MUST, but that it's one of the only things that he can keep down for any length of time. His stomach rebels against anything without it, and out it goes, one end or the other. He can stomach chicken, and sometimes pork, and steak once a week, but even those are beginning to affect him. Not only is it a struggle to get him what he needs, but we're having a hard time finding things that will actually stay in his system for any length of time.

We're hoping to find some recipes that contain vegetables cooked into things we know he can stomach, even if we have to hide them. He balks at eating in general, especially something that's unusual in our diet, out of fear that it'll make him ill. Raw vegetables, and even cooked ones at times, make him very ill. The poor thing ends up doubled over in pain after every meal.

Thank you for your help, I'd love any recipes you have to share. I hope you feel better soon

 

[Libbyt]

Kirsten says "a hill I would die on". I agree. But just wanted to add in there, I am soooo tired of hills I would die on. And I'm pretty picky about the hills anymore. Just wanted to throw out a group hug to all of us that have to make those decisions all the time. I don't know about the rest of you, but it's tiring and hard.



AMEN, sisters!!!!!! Very well said. I get so tired of looking around and seeing "hills" that just can't be ignored, except that all the other parents are IGNORING them, so I can't ignore them, I have to DO something about them! It IS exhausting, mentally and physically!

Libby

 

[DisDreaminMom]

Kristen is going to give LibbyT her spot on the vacation list since she is feeling OK without one!

Hey Saveaqarter, I'm going to play around with some thoughts on foods for DH, so give me a day to brainstorm. I wonder what's going on with DH? Protein is bothering him, too? I'm guessing Diary is in that grouping, too. When I was a teenager, I was having issues with eating meat and processed foods. Meats in particular made me cough up blood or throw up. It was really fun. So for several years, I only ate vegetables and starches. It went away after about 3 years, but I wonder if I feel so much better right now (other than flu) because I'm eating that way again. There is nothing worse that the feeling that you are going to get sick from eating things. It gets it's own category under eating disorders, for sure.

What's his comfort food? What foods make him upset? What does he think is his favorite meal? Can you tell I'm used to specialty cooking for very determined little people?

Becky, I second your fried potato thing. I do sweet potatoes and new potatoes in some canola oil and they are SO GOOD! I serve them together and the kids and DH love them. Yeah, I know it's fried, but it's still better than Mickey D's or something from a bag. And once a week never killed anyone.

About this Hill thing. I wish life had no Hills that any of us had to die on. Really. It IS tiring. We'd be fools to not admit it. But I try to keep my Hills in perspective with others' and then I calm down and it's OK. (Or I go on vacation...)

 

[Earstou]

It is a public website so let me know if I've violated anything by posting this link. Here is the link:

http://www.spdcanada.org/images/uploads/DoYouKnowMe-Educators.pdf

Okay, I have to ask about the "I sit with my legs in a “W” position when
working on the floor" quote.
My ds did this in preschool, and the teacher had a fit because she said it could damage his knees, so we always had to tell him "criss-cross applesauce" to sit correctly (like the teachers did).
I have never heard of this outside of school. What about it is a sensory problem??? Can anyone explain this further for me?

 

[KirstenB]

Okay, I have to ask about the "I sit with my legs in a “W” position when
working on the floor" quote.
My ds did this in preschool, and the teacher had a fit because she said it could damage his knees, so we always had to tell him "criss-cross applesauce" to sit correctly (like the teachers did).
I have never heard of this outside of school. What about it is a sensory problem??? Can anyone explain this further for me?

Zoe was in Early Intervention at 11 mths because of low muscle tone. So we worked with a Physical Therapist for nearly a year. Once Zoe was able to sit up, she always sat W style. The therapist told me it was a very easy, lazy way to sit. She always discouraged it, because she siad Zoe's muscles would work much harder, especially her trunk, if her legs were in front of her.

However, she didn't say it would damage Zoe's knees.

 

[GraceLuvsWDW]

Okay, I have to ask about the "I sit with my legs in a “W” position when
working on the floor" quote.
My ds did this in preschool, and the teacher had a fit because she said it could damage his knees, so we always had to tell him "criss-cross applesauce" to sit correctly (like the teachers did).
I have never heard of this outside of school. What about it is a sensory problem??? Can anyone explain this further for me?

Yes. My dd's OT explained it to me in the sense that my dd has poor proprioception, vestibular sense and coordination. They sit this way because they don't feel balanced sitting up criss cross applesauce and the "W" (with feet splayed to the sides like a frog) gives them better sense of balance with more contact to the floor. It IS something that should be discouraged because of damage to the hips but it should be noted that these kids feel less secure sitting upright without the foundation of legs. That is also why my dd leans on her elbows, leans on her desk or table and never seems to be sitting or standing upright. Low muscle tone also plays a role in this, which is also a symptom of Aspergers. As far as the vestibular and proprioceptive disturbances, can you imagine your eyes and "body sense" doesn't match up? You'd definitely want to stabilize yourself more than someone who intuitively senses their body's place in space with regard to objects around them.

I hope I haven't confused you even more!

On the Hill thing, I have a feeling my immediate future is going to be quite mountainous. I'm setting out for the Tour de France!

My dd's teacher sent home a very nice note yesterday. He said she was a very special little girl and he prays God gives him the patience and knowledge to educate her and support her in the special ways her gifts demand.

I guess I don't have to tell you guys I cried when I read that! I feel so lucky that he came into my dd's life!

 

[Earstou]

Yes. My dd's OT explained it to me in the sense that my dd has poor proprioception, vestibular sense and coordination.........................................

My dd's teacher sent home a very nice note yesterday. He said she was a very special little girl and he prays God gives him the patience and knowledge to educate her and support her in the special ways her gifts demand.

That was a sweet note!!!!

Your explanation about sitting in a W hits the mark for ds. Wish someone could have explained it that way 11 years ago! Back then he also couldn't catch a ball, and I was told it was balance issues. We played catch every morning while waiting for the bus to improve his balance. The PE teacher worked with him too.
I fear he actually has the same disorder I have, Arnold Chiari Malformation ( a brain malformation) because my biggest problem is my balance. Interesting.

This summer he did the Cope challenge course at scout camp. He almost failed because he had to climb a rope ladder. With his weird balance, he froze part way up, and had to be talked the rest of the way up. Once he got up he was fine with the other rope work, and had no problem with the zip line. We thought his balance problems were gone, but I guess not totally.
Thanks for the replies!

 

[BeckyScott]

I used to sit like that, when I was little. I don't know exactly why I did it, but I'm pretty uncoordinated. It does make sense, sitting it a W you kinda have a kickstand on both sides to stabilize you, criss-cross applesauce you don't. I do remember it was quite comfortable to sit like that. I bet if I tried it now, you all would have to come un-stuck me.

 

[m!ssemmx0]

I used to "W-sit" all the time when I was little, even during school. No one really made a big deal about it. I stopped doing it when I was around 8, after I had surgery on both my legs. Now I can't even attempt to sit like that...it hurts too much.