SID support thread - Page 3 - Mothering Forums

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#61 of 241 Old 08-15-2006, 12:22 AM
 
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Originally Posted by judejude
Do any of you with kids, who are violent or have big meltdowns and/or outburtst, also have other kids and how do they handle the "episodes"....and do you plan on having more kids?
I'm just wondering how that all works out.
And if the one with the SID is older how did they react when the new baby came?
I have 4 kids and my son has been prone to violent meltdowns in the past. Thankfully in the last 2 years he has only had one really major one and I was alone with him at a new therapist appointment. He has horrible anxiety over new places and I didn't explain it well enough then.

Overall my kids handle his differences pretty well even when he gets explosive. He still can be aggressive or have troubles but it is typically managable and he tries really hard.

Last weekend we went to disney which was really trying on him and he had a couple meltdowns which involved crying and yelling mostly. He did have some minor aggressions to me when he was really stressed. Usually he doesn't do that anymore but disney was way out of his comfort zone. The kids are very supportive. They usually just give him space and wait for mom to take care of it. They were really good about doing things in a way that would be less stressful on him. The thing I was impressed with is that they weren't "embarrassed" by his behavior. They have learned to accept him as is.

Now at home on the other hand, they are siblings and they have been known on more than one occasion to push a meltdown so they can get thier way. If they don't want to play with Mike or want him out of the way they know how to push his buttons in hopes of getting him in trouble. Unfortunately for my kids, mom is wise on them, LOL.

They do get better as they get older, particularly with intervention. Mike will continue to gain control over his anxiety and behavior. I don't think I will have to worry when he is a teen. Overall he is a really good kid. He doesn't want to hurt people, his brain just doesn't always cooperate. As he gets older and gains more control it will get better.
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#62 of 241 Old 08-15-2006, 12:47 AM
 
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I really tried to just let this post go, but it bugged me too much to not respond.

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Originally Posted by ikesmom
Ok Judejude that is a freaky story! I started feeling anxious just reading it. I just laid in bed last nite thinking about how that must feel and I am glad you were cosleeping. My heart aches to know you worry about her wanting to hurt you.
Just so you know, I am not afraid of my dd and I don't worry about her hurting me. I worry about the stuff she says and what that means for HER both now and in the long term. I never said anything about being afraid of her hurting me.

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I just think that emotions can be so intense esp for children. When I see a kid having a fit or tantrum ect. I often think "man... that must feel good!" I wish that I could just release like that sometimes, but I don't because I learned to control it.
OK, our kids DO NOT feel good when they are freaking out and it is not a "tantrum" or a "fit" the way people usually think about them. This isn't a case of delayed "terrible 2's" or something.
It doesn't feel good---it feels horrible. They feel out of control and have trouble calming/soothing themselves.
In my daughter's words -- "When I do that I feel like I'm crazy and I think people are going to think I am a monster".
This has nothing to do with what we think of "blowing off some steam" or something like that. We cannot know what it feels like in the least (unless we have some serious issues ourselves).

Quote:
Give her time to learn about how to react when she isn't in control and tell yourself that God will not let that happen to you. Let go of those negative thoughts and worries because they make us mamas a mess. Don't spend time on what could happen because you are already working on helping her.
First of all, it is not about just waiting for her to figure out how to control herself. It doesn't work like that. This isn't a matter of our kids being delayed or immature and they will just catch up in their actions. It is way bigger than all that. If only it were that simple to figure out.

Also, I am not religious so the "let go, let God" thing will not work for me.

It is also not about having negative thoughts or worries. This support thread is for those of us with kids with SID who come here to vent, share experiences and know that we are not alone. Also, to pick each other's brains for what techniques or therapies have worked for us.
If it were as simple as learning to think positive and letting go of negative thoughts---well, I'd try it I guess, but that can be hard when you are cleaning up puke for the 3rd time that day because your dd tried to eat something that had some texture she didn't expect and then she got mad at you for something and knocked the puke all over you and then you tried to get her out the door for an appointment, but since she can't handle transition she started freaking out about that and said she wasn't going and slammed the door to her room and refused to come out, and then she ate too much food and threw up again, and then she took a bath but mid way she started crying about her old PCA (personal care attendant) dying (4 years ago) and so you had to pull her out with a wet head but without shampooing it...........etc. I could go on and on, but you get the idea.
It might be hard to just give up the "negative" feelings.

Quote:
My oldest dd ( step daughter) is 11 and has melt downs and emotional episodes sometimes. She forgets how events happened and changes stories for better or worse at times. I think it is a part of her thought process that is imature. I know she needs an outlet and has control issues. She is trying to be perfect and doesn't like anything that is challenging. We are reallly having a hard time with her. She doesnt have any issues or needs and she is are most challenging child lol.
I'm not sure how this is supposed to relate to our kids.

Quote:
Point is, don't feel that this is necessarily something to do with one of her needs. We often forget that so many things are typical of children. She s gonna be alright and so are you.
Wow! This feels kind of insulting to me. Of all the stuff we have to deal with, it can sound a bit....can't think of the word....ummm, insulting. If this is typical of children then I don't know where I've been. Read some of the stuff on this thread posted by all the moms and tell me if it sounds like "typical kid stuff". Her psychiatrist's and mental health therapists don't think it's typical.
I do realize that 'typical kid stuff" is woven in with the other issues they have, but what we are talking about here is not even close to typical.
I do understand, though, that we can get so swept up by all the SID and the other issues that they have that we can forget that some things ARE typical.
Generally speaking, on this thread, we are not speaking of typical anything -- that is why we are here.

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#63 of 241 Old 08-15-2006, 12:56 AM
 
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Originally Posted by rbear4
I have 4 kids and my son has been prone to violent meltdowns in the past. Thankfully in the last 2 years he has only had one really major one and I was alone with him at a new therapist appointment. He has horrible anxiety over new places and I didn't explain it well enough then.

Overall my kids handle his differences pretty well even when he gets explosive. He still can be aggressive or have troubles but it is typically managable and he tries really hard.

Last weekend we went to disney which was really trying on him and he had a couple meltdowns which involved crying and yelling mostly. He did have some minor aggressions to me when he was really stressed. Usually he doesn't do that anymore but disney was way out of his comfort zone. The kids are very supportive. They usually just give him space and wait for mom to take care of it. They were really good about doing things in a way that would be less stressful on him. The thing I was impressed with is that they weren't "embarrassed" by his behavior. They have learned to accept him as is.

Now at home on the other hand, they are siblings and they have been known on more than one occasion to push a meltdown so they can get thier way. If they don't want to play with Mike or want him out of the way they know how to push his buttons in hopes of getting him in trouble. Unfortunately for my kids, mom is wise on them, LOL.

They do get better as they get older, particularly with intervention. Mike will continue to gain control over his anxiety and behavior. I don't think I will have to worry when he is a teen. Overall he is a really good kid. He doesn't want to hurt people, his brain just doesn't always cooperate. As he gets older and gains more control it will get better.
Thanks rbear4, but can you tell me if he is the youngest or if he had to deal with a new kid coming into the family and how that went over? and what age he was when the new kids were born.

I know it is not problem free, when having more kids, but it is good to see that other people have had more kids even though they had their hands full.
I think some people think we're nuts if we want to make our plate any fuller than it already is. For myself, even though dd is 10 and our only child, I just can't imagine never having any more kids to raise

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#64 of 241 Old 08-15-2006, 03:17 AM
 
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Ok I guess I just don't understand judejude but I never meant it as an insult and I am sorry. I just felt like I wanted to say something that would be positive and encourage if I even could attempt. Your right I don't have these problems and I could never make it any better for you or anyone else. I am sorry.
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#65 of 241 Old 08-15-2006, 04:55 AM - Thread Starter
 
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Both of our sons are prone to tantrums and emotional outbursts. Our oldest is the most emotionally volatile, but is not at all aggressive. Our younger, who has more extensive SID than his brother, has more tantrums and struggles a lot with controlling his aggression, but does not become an emotional wreck or get depressed and stuff like his brother does. Our own 2 are so different in this regard, but really have the same problem.
Anyways, we have been making halting progress in younger bro's control over his physical aggression. The O.T. explained that while he is receiving vestibular stim, we throw in activities to stimulate higher cognitive levels. Part of SID, at least in his case, is decreased connection (control) of higher levels of thinking over the lower, more instinctual levels. So this therapy approach aims to strengthen that connection. Since beginning that approach, I began to see DS, for the first time, want to hit his little sis, but stop himself. This was different than him simply being in a more regulated state, he actually used control over his impulse to hit - I think that came from the therapy.
Judejude, in answer to your question about older sibs accepting new sibs, it was extremely difficult for our oldest to adjust to sharing attention with his baby brother. He was only 22 months at the time, but he still comments now on the glory days when he was the only one. One of his biggest hangups is being able to share attention with anyone. He even gets mad when I talk to my husband "too much" instead of him. I used to think he had this problem because of the trauma of losing his place as the only kid. But, as we begin to understand the problems he has with language processing, I think it might be due to the fact that he can't follow conversation with more than one partner. Now that the boys are 7 and 5, they are best friends. Neither of them had as negative a reaction when baby #3 came along, because that solo limelight was already gone. They were 5 and almost 3 yrs old.
We definitely have our hands full, but are so glad we have the three. There are so many pros and cons to weigh, and of course the best choice is so individual for every family, but here are a few pros: Our home is a good place to practice all the social skills that are so hard for them. Our boys have each other to share their struggles with so that they feel less alone and different. Their little sister, who does not have sensory issues, is a great calming influence and example of self-regulated behavior (as long as mettling grandparents, etc. don't compare them to her.) She has also brought out the tender, nurturing side of the boys.
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#66 of 241 Old 08-15-2006, 10:21 AM
 
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Originally Posted by JBAmom
Judejude, in answer to your question.....................
One of his biggest hangups is being able to share attention with anyone. He even gets mad when I talk to my husband "too much" instead of him. I used to think he had this problem because of the trauma of losing his place as the only kid. But, as we begin to understand the problems he has with language processing, I think it might be due to the fact that he can't follow conversation with more than one partner.
Wow, this is totally DD. She is so good when it is just her and I at home (mostly) and just a bit less under control when it is just her and dh. The biggest problem is when either her PCA comes and I'm still here or when dh comes home. God forbid when we're all here (the three of us adults) because she just cannot handle it at all.

I never thought anything about it being that she can't follow a conversation with more than one partner.hmmmm I'm going to have to think on that....and look into it.
DD also has LD's and non-verbal(processing) LD is definitely one of them.

Thanks for bringing that up and for also telling me your experience with having more kids. It was very helpful.

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#67 of 241 Old 08-15-2006, 01:36 PM
 
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He is 10 and my 2nd child. He has an older sister with AS (12), a younger NT sister(8) and a younger SID/ADHD like brother(6).

My other 2 non-NT's are challenges to themselves but they all still do well with him. He is particularly close to his 8yo sister. In fact, one time Mike had just frustrated the heck out of me and I was scolding him pretty loudly. Emily turned and said "Mom, your confusing him!". She is his protector, mentor and buddy. It is sweet to see her walk into school with him. She lets him think that he is walking her in, but in actuality you can see she is taking care that he gets where he needs to and no one is teasing him. She still gets annoyed with them, lol. I should write in a letter she wrote that she wants to send to a special needs sibling book, but you can tell she loves him.

My friend I have posted about has a very challenging 11yo. He has a baby sister who is 9years younger and a new downs syndrome sister. Those babies mean the world to him and have helped his behavior tremendously. At least the one has, I am assuming the newborn will do the same. He will do anything for those babies and if he starts to get upset his mom asks him to help with his sister in some way. Read to her, play with her, check on her. It is a wonderful thing.
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#68 of 241 Old 08-15-2006, 02:55 PM
 
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Hey, here's a question for you guys.
I never asked it anywhere else because I didn't think anyone else would really get it and then I would just be frustrated.

OK, dd watches waaaaay too much TV. It is a constant battle. It is a nightmare really. I am convinced that her development has been or is being stunted by too much television, however she is still watching it :
I know all about TV making ADHD worse and not helping with the attention span, patience and the whole other list of things. I am not ignorant about the TV issue.

It all started when she was a bit over 2 and we discovered that if she was unable to be calmed she was easily distracted by a video. After that she only watched a video once or twice a day (a lot for a 2 yr old I know).
But over time she has watched more and more.

DH and I cannot have a serious conversation about anything because she is so impulsive and cannot stop interrupting and all of that. Also, if she has had a meltdown and she has recovered, but still can't quite make it over the hump of getting back to her day, well then we distract her with a show. It's the only thing that is almost full proof.

It cuts way down on the meltdowns.

Right now instead of trying to limit TV once again I am just insisting that she take more breaks and does other things that are valuable.
She goes lots of places and does lots of things. But, geez...I feel so embarrassed and ashamed about this TV issue and it is even hard for me to talk about because I feel like it is my biggest failure as a mother.

I'm telling you here to get your feedback because I thought you all know what I have to deal with from day to day more than anyone.
DD is also in a wheelchair and can't just go outside to play or just run around at the park. She has never ever played independently. We have worked at that her whole life, in therapy and at home. You can set up everything for her but she cannot do it alone for any amount of time. I know that TV has not helped this at all. It is an up hill battle and I feel so horrible about it.
I was the person who never intended for my kid to watch TV at all. I didn't have a TV when I was a kid until I was 12 and then it was very restricted.

I can manage to get some things done when she is not watching TV although it is very difficult sometimes, but dues to her anxiety I cannot take out the garbage or water the plants outside or go to the basement to put in a load of laundry without her watching TV. If she is not distracted by TV she starts freaking out about me not being "there".

Anyway feedback would be helpful, and be gentle with me---I already feel horrible about it.
And, please, don't post a response if you aren't speaking with some knowledge of SID and other similar issues.

TIA

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#69 of 241 Old 08-15-2006, 05:01 PM
 
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I won't judge you (as my kids are watching nickalodean right now, lol). It is something we struggle with too, mostly with mike, but with all of them. It is hard and I do understand.

I do notice when we do cut it back, that behavior actually improves after the first day or 2. There have been times where the kids have lost access to electronics for a period of time and once they get over the initial shock they do great and it makes me consider taking all tv's out of the house. BUt then my DH reasons with me and moderation really seems best. I think the TV actually affects my kids sensory issues. It makes them feel better in the short term but in the long term it is almost like having too much coffee. They start to twist.

The only thing I have really found that works is making a visual schedule and sticking with it. (easier after the initial time and I still fall back on occasion to allowing too much) I don't know how old your dd is, but mine are a little older so that may be a little easier for me now but you can still do a picture schedule.

I also admit that times like summer vacation and when I am under extra stress I slip and the tv is on more and more and then it becomes a regular struggle again.

Our basic school day schedule (on a no therapy day) is

get ready for school
school
freetime and snack (no electronics)
homework
Freetime (no electronics except for some special occasions like a contract)
Dinner and chores
Checklist (baths, get ready for next day, etc)
tv (electronics)
bedtime

I admit it is easier for me because I live in southern cali so even in winter they can play outside after school. But even if you have more tv time on your schedule initially just having those exact time pictured will help keep the arguments and constant requests for tv down.
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#70 of 241 Old 08-16-2006, 01:01 AM
 
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I don' t have any suggestions about the tv thing but I'm eagerly reading responses b/c we have the same issue at our house and it started the same way. Now DD will look at me through teary red eyes midmeltdown and wail, "I want to watch a video...." She has made the association too- sometimes its the only thing that calms her down and also the only thing that can get her out of her funk once she's gotten really upset.

Something interesting that I have noticed, DD turns her head to the side when watching so she can only see the tv with one eye. Does anyone else see this? I mentioned it to OT- she thinks the tv is too much for her and ultimately contributing to the freakouts. DD is only 4.5 so I try to tell her 2 videos or show/per day- one in the morning, one in the afternoon. That way if I really need her to be occupied (like right now- we're moving), I can play a whole hour long video, other times I can play just an episode- she doesn't seem to know the difference. My goal though is to limit her to 1 hr total per day- 30 min PBS moring, 30 min video episode in afternoon. We often go way beyond that & I also have had huge amounts of shame about this and kept it kind of a secret at times so I really relate. Also DH & I are both major tv addicts ourselves.

But our struggles with DD are much less severe- DD for all her freakouts does play independently for hours every day so I don't really have a good excuse for using tv as much as we do!

re: sibs, DD was 3 when little sis was born and it was really rough the first year, lots of aggression toward baby. its still hard at times- little sis going for a toy or into DD room, sets her off - "SHES GOING IN MY ROOM. SHE'S GOING IN MY ROOM!" (red in the face screaming hysterical, pushing baby down, or slamming door in her face). It took me awhile to see that this had become yet another phobia. (partly b/c I allowed her to limit access to her room anytime she wanted which I think now was a mistake) but anyway, things are much better and they play all the time and love each other tremendously. I feel like each is the best gift I could have ever given the other. But I honestly can't imagine having a third!

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#71 of 241 Old 08-16-2006, 02:12 AM
 
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About looking at the tv like that. You may want to have her vision evaluated. I don't mean a regular eye test but developmental vision. It is pretty common particularly for SN kids to have vision processing issues as well. And typically it can be drastically improved on with either some home exercises or vision therapy. And if the child has an IEP, often vision therapy can be covered on that.

Found my son had a convergence problem (eyes not working together) because he was reading off to one side out of one eye like you mentioned. My NT daughter was delayed in her reading (end of 1st grade and barely reading mid kindie level). Took her for an eval, the recomended therapy we couldnt afford so I did some at home and she is reading on grade level and was recomended for GATE.
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#72 of 241 Old 08-16-2006, 02:22 AM
 
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anyone doing this? How can you tell if it is helping?

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#73 of 241 Old 08-16-2006, 02:28 AM
 
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thanks rbear4. Wow- you must feel really proud to have done that on your own!

Who would do this type of vision eval if not the OT office?

The school system did agree to give us an IEP but we decided to turn it down b/c they weren't really offering anything helpful.

But where can I read about vision therapy? What is it called, so I can google it?

thanks,
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#74 of 241 Old 08-16-2006, 04:25 AM - Thread Starter
 
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Our older DS who has ADD/SID cannot watch TV either without some kind of fall-out. But sometimes we do let him watch at night before bed as a reward. And I wouldn't tell him this, but I don't recognize the same problems with anger, etc. when he watches it before bed. I figure it's because he's already tired and all he has left to do is go to bed. I don't understand why TV messes these kids up so much, but DS tells me it makes him tired, and I guess that would aggravate his already decreased-alert state, especially if we are expecting him to do anything afterwards. Maybe he gets mad because he is too tired to be functional.
Anyways, one thought is that if there is a time that TV is less aggravating for your DD, you could plan on getting your chores done at that time. We have the same problem around here, our boys freak out if I'm not on the same level of the house that they're on. So I use small windows like I just mentioned to get anything done. This is also why I am up so late every night. I think I get nothing done during the day.
Another thing we have noticed is that our older DS does not get the same bad affect from educational computer games. And the computer does allow the boys to be OK away from me. But watch your DD, because computer does mess up a lot of sensory kids.
Jewelie, the type of doc you want is a developmental optometrist, you might also get results by googling vision therapy. We are waiting to get a sensorimotor vision exam next month. As for brushing and joint compression, we are doing it, though not as consistently as we should (as with everything else we do). I wonder too how to tell if it's helping because sometimes DS seems more relaxed, but sometimes he seems agitated by the brushing part. When he says it makes him feel floppy, I think that's a good thing for him because he usually has more rigid tone.
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#75 of 241 Old 08-16-2006, 11:25 AM
 
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Quote:
Originally Posted by Jewelie
thanks rbear4. Wow- you must feel really proud to have done that on your own!

Who would do this type of vision eval if not the OT office?

The school system did agree to give us an IEP but we decided to turn it down b/c they weren't really offering anything helpful.

But where can I read about vision therapy? What is it called, so I can google it?

thanks,
julie
Usually through special eye docs you do the evals. Here is a link and it has a referral list there too.

http://www.vision-therapy.com/

We are lucky. There is a husband and wife eye doc team in the next town who not only is big in vision therapy, but they have a son with autism. I take Mike there for his regular eye exams too (he has glasses) because they are understanding and kind with him. He is extremely anxious at any new doc and will often meltdown.

I am darn proud but it was really easy with Emily. I was given a book from a teacher friend with all kinds of exercises in it. She would have done better with the vision therapy but it was going to cost 3K that I didn't have. Some insurances or schools will cover it but she didn't need an IEP and my insurance is poopy. She had the more severe vision problem. Mike only had one type of vision problem and all I had to do with him was to work on having him cross his eyes by staring at 1" of newspaper at the end of a pencil while I moved it closer and farther from his face. He was tougher (naturally) and it took a little longer as he didn't have the stamina to work on it as much as we should.
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#76 of 241 Old 08-16-2006, 11:26 AM
 
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Oh geez, the brushing!

On one hand I wonder if she would be better if we did the brushing (we refused), but I'm not sure I could live through it and I can't picture it not giving her more long term anxiety. My biggest issue about it was that it only works in a certain amount of kids and even then the difference may be very slight.

I've seen some of the kids getting the brushing done and them screaming and all of that and this would be my dd for sure. I just couldn't do it. Besides, having to do it so often everyday? I'm not sure I would be consistent enough -- that's a big comittment and why put her through it if I'm not even going to do it right.
She has been to hell and back medically and that is partly the cause of the SID anyway, so I just feel like it is further trauma.

That is a tough one.

Sorry, you didn't ask me my opinion, but I just was thinking out loud about dd and me freaking out about the idea

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#77 of 241 Old 08-16-2006, 11:35 AM
 
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Some kids have good luck with brushing and compressions but we did not. As a disclaimer, with Cait I was not taught how to do it properly so that may have been the problem. It made Cait more sensitive to sensory input. She was 3 then and suddenly she wouldn't wear a seatbelt without screaming like a banchee, etc so we stopped. I can't remember why it didn't work with Mike.

The joint compressions alone work great with Mike. I still use those. I think the brushing activated him too much but the compressions to calm him and ground him. So does heavy work (wheelbarrow walks, pushing and carrying heavy things, etc) However, using a trampoline or something with lots of movement or vestibular with the compressions activate him too.
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#78 of 241 Old 08-16-2006, 11:53 AM
 
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Originally Posted by rbear4
Found my son had a convergence problem (eyes not working together) because he was reading off to one side out of one eye like you mentioned. My NT daughter was delayed in her reading (end of 1st grade and barely reading mid kindie level). Took her for an eval, the recomended therapy we couldnt afford so I did some at home and she is reading on grade level and was recomended for GATE.
Well, dd had strabismus (sp?) since birth (probably from her hydrocephalus) but it was corrected totally by glasses. She was supposed to wear them at 12 months but we couldn't get her to so we said screw it and she didn't start wearing them full time until she was 2. I wonder now if that affected her sight---who knows. The eye Dr. threatened to put casts on her arms so she couldn't reach to take off her glasses!!!!!

Anyway, dd went to 1st and 2nd grade at a charter school that had a brain clinic attached to it and they have their own eye Dr. there. Well, Raven was referred by her OT, at the school, to have an eye exam and they told me that her eyes do not work together. This was the first I had heard such a thing and lord knows she goes to an eye Dr. every year and more when she was really young. She does see an opthomalogist(sp?) and not just a optomitrist at vision world or something.... But I guess they don't cover everything.
Well, she was 8 when we found this out and they told me that vision therapy is usually what is recommended, but that 8 is considered the cut off -- like whatever your eyes are like at this point is what they are going to be. They put her on the waiting list for vision therapy, but apparently the kids who they think they can help more get preference---whatever.
So anyway, dd is 10 and her eyes will never work together. I am told that what will happen, and is already the case, is that the one eye will just continue to lose vision from not being used and it will end up as if she only has one eye working for vision almost.

She acts like she can see out of both to me, but one is weaker in eye exams.
Apparently what happens is that the brain cannot see 2 places at once so it picks only one eye to see out of...thus, the one eye being ignored comepletely.

Obviously I wish we would have caught this sooner. Too late now I guess.
They did do some stuff in OT when she didn't get the vision therapy right away. Maybe it won't turn out as bad as they made it sound -- who knows. It does sound logical though.

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#79 of 241 Old 08-16-2006, 11:55 AM
 
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Have I mentioned that this is my favorite thread on all of MDC???!!! This is so helpful in so many ways.

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#80 of 241 Old 08-16-2006, 12:17 PM
 
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Hey, I got one! Let's talk about dental care

My kid does brush her teeth (didn't always) but without toothpaste. We tried that and worked on it like crazy, but it only went so far and I said screw it. At least she brishes them.

DD has been to the dentist 3 times. Each time they did an exam and 2 of the times they put in a filling. I do not believe in the silver fillings, for health reasons, but she ended up with them because it was the only thing we could do that the Dentist would not have to use any machinery. She just dried the area and packed the filling in there. (they are both tiny fillings)
DD cried the whole time like she was going to die. IT WAS HORRIBLE!!!

The 3rd time I took her for an exam she was probably 6 or 7 and during the exam dd was screaming 'I can't breathe, I can't breathe! You're choking me!"
It was horrible. Thank goodness it was very short and afterward I was holding dd in my lap and comforting her. I then asked the Dr. if there was any sedative we could use for next time, etc. She chuckled and said that they do not sedate for that. She acted like that was the craziest thing she ever heard. Then she proceeded to tell me that the reason that dd acted like that was because I did not let her know, in no uncertain terms, that this is what was expected of her. She also said I was babying her, etc. I guess because I was comforting her now?
Did I mention that this is the largest and most well known pediatric dentist group and supposedly they take a lot of kids with disabilities and almost like they specialize in them. I can't remember what I said back to her, but I said something about disagreeing with her. Anyway, when we got in the car I told dd that she would never have to see that dentist again. That made her feel a bit better.

Well, that was our last experience and there has been no referrals from anyone and I have asked everyone. The friends I know who have kids with autism don't know what to do either.

There is a new dental clinic that has opened in one of children's hospitals here and I want to take her there, since there's no where else anyway. I have put it off and am worried about it. The last time we took her in because we saw a brown spot on her tooth. We haven't seen any more, but that doesn't mean her teeth aren't rotting out of her head as we speak.

They have always said (the crazy Dentist among others) that when she has any procedure under sedation (or anesthesia I think) that they will come clean her teeth and do an exam, but whenever we mention this to the surgeon or whoever they are not into that. I think they feel like it is not that important compared to what they are doing ---which is true, lord knows.

You'd think that in an area of 3 million people you could come up with some person who is not some whacko dentist and who can deal with kids like ours.

What do you do about this dentist thing?

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#81 of 241 Old 08-16-2006, 12:23 PM
 
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Originally Posted by Jewelie
I don' t have any suggestions about the tv thing but I'm eagerly reading responses b/c we have the same issue at our house and it started the same way. Now DD will look at me through teary red eyes midmeltdown and wail, "I want to watch a video...." She has made the association too- sometimes its the only thing that calms her down and also the only thing that can get her out of her funk once she's gotten really upset.
julie
Well, it is the ultimate distractor (is that a word? )
Obviously when she was a toddler you could distract her with other things---nursing being one of them (oh, those were the days) but it is hard to get her totally off the track of whatever is going on without a distraction like TV. The computer and music don't work and if you ask her if she wants to watch TV when she's freaking she will say YES once in a while, but mostly she gets pissed because she knows you are trying to get her to calm down.
However, if I just turn the TV on and don't say anything to her she automatically gravitates to it and before you know it has quit crying.

This TV issue really sucks :

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#82 of 241 Old 08-16-2006, 01:03 PM
 
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I won't judge you (as my kids are watching nickalodean right now, lol). It is something we struggle with too, mostly with mike, but with all of them. It is hard and I do understand.

I do notice when we do cut it back, that behavior actually improves after the first day or 2. There have been times where the kids have lost access to electronics for a period of time and once they get over the initial shock they do great and it makes me consider taking all tv's out of the house. BUt then my DH reasons with me and moderation really seems best. I think the TV actually affects my kids sensory issues. It makes them feel better in the short term but in the long term it is almost like having too much coffee. They start to twist.
Yes, I have already seen that when I stick to her watching very little TV that is does helpher behavior a great deal...for real. It does help in the short term though. I'll have to work on getting over the hump again -- just a few days of not much TV and she'll be doing better :

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The only thing I have really found that works is making a visual schedule and sticking with it. (easier after the initial time and I still fall back on occasion to allowing too much) I don't know how old your dd is, but mine are a little older so that may be a little easier for me now but you can still do a picture schedule.
I cannot use any charts or schedules, if you can believe it! DD has been in therapy her whole life and when I took her out of school a year ago it was a big deal. School was really making her a mess. Everyone her whole life made charts for everything. Now if I even show her something or mention it she satrts yelling "no charts, no charts!!!" and if she gets a hold of it she will throw it on the floor or try to wreck it. This is how she is with the time timer too now. If I make her sit on the bed for hitting me you cannot put a time timer there even though she has no concept of time. We have now made a deal with her that we will not use the timer for time outs anymore. Of course this leads to her asking all the time when she can get up and how much time is left, etc., but what can you do?

When I limit her TV we go by shows, sinc ethey're 30 min. but then she argues with me about how many she has watched. She does eventually believe me and she doesn't ever get out of control -- just argumentative(sp?). She cannot ever remember if she's watched 2 shows or 10 shows. You have to list them all and count them on your hands ot her as you say them. Then she'll know you are telling the truth.

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I also admit that times like summer vacation and when I am under extra stress I slip and the tv is on more and more and then it becomes a regular struggle again.
Last time I told her we were cutting back the TV she asked me if this wa forever or if this was going to be like the last time since I'm always saying she has to cut back. How pathetic is that? The kid even thinks I am inconsistent.:

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I admit it is easier for me because I live in southern cali so even in winter they can play outside after school. But even if you have more tv time on your schedule initially just having those exact time pictured will help keep the arguments and constant requests for tv down.
Well, that is a problem -- she is in a wheelchair, plus more vulnerbale so she can't just go outside and play -- same goes for going to the park,etc.

It is true that having set rules do sut down on the freak outs over TV. If I just say she's had too much TV so we should turn it off, she is way more likely to freak out than if we always shut it off at a certain time.


Thanks so much for your input. It was very encouraging to me when I read it, so last night we did arts and crafts at the kitchen table and it was really fun. She went to bed way earlier than usual because she wasn't trying to keep herself awake to watch TV.

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#83 of 241 Old 08-16-2006, 01:16 PM
 
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Our older DS who has ADD/SID cannot watch TV either without some kind of fall-out. But sometimes we do let him watch at night before bed as a reward. And I wouldn't tell him this, but I don't recognize the same problems with anger, etc. when he watches it before bed. I figure it's because he's already tired and all he has left to do is go to bed. I don't understand why TV messes these kids up so much, but DS tells me it makes him tired, and I guess that would aggravate his already decreased-alert state, especially if we are expecting him to do anything afterwards. Maybe he gets mad because he is too tired to be functional.
Anyways, one thought is that if there is a time that TV is less aggravating for your DD, you could plan on getting your chores done at that time. We have the same problem around here, our boys freak out if I'm not on the same level of the house that they're on. So I use small windows like I just mentioned to get anything done. This is also why I am up so late every night. I think I get nothing done during the day.
Another thing we have noticed is that our older DS does not get the same bad affect from educational computer games. And the computer does allow the boys to be OK away from me. But watch your DD, because computer does mess up a lot of sensory kids.
Well, dd is only so much interested in the computer, although she will do it at times. it is not distracting to her the way TV is though. I guess because she has to think about what she is going to do and actually click the mouse or something

I do need to organize my time better. If I do the laundry, etc. only during the time that she is watching TV during the day (or at night ) it would be better than me just wanting to throw in a load whenever. She can go outside with me to water flowers, or take out the garbage, but she is too heavy these days for me to carry her to the basement.

It can be better for her to watch TV before bed sometimes. I think it takes her longer to fall asleep, but if she is cranky or whatever you could have her crying and a mess (and in some cases throwing up her medicine from getting too worked up).
My plan, from now on, is to not have her watch TV before bed so she will go to bed earlier and not watch so much TV...BUT, if she is fruity I will put it on because she will not settle into the idea of sleeping unless she is calm to begin with.

Part of this TV problem has to do with her not being in school anymore (last yr being the first year homeschooled). When she was in school she was so exhausted and out of it after school that if you didn't let her veg. out on TV she would be an emotional basket case for the rest of the night. We had no choice at that time, but she was also in school all day doing stuff that wasn't TV.
Now she doesn't need to veg. out because she doesn't walk around so exhausted.

It's a work in progress. I just don't want to screw her over in the long term.

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#84 of 241 Old 08-16-2006, 08:40 PM
 
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What do you do about this dentist thing?
I'm new to the thread, I hope you don't mind. My ds is 5 and has SID. He recently had to have lots of cavities filled and a crown put on. I took him to a ped dentist that does sedation. They gave him some oral meds to make him sleepy and then used nitrous oxide. He did fine. I told the dentist about his sensory issues and they said they see kids with SID a lot.
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#85 of 241 Old 08-17-2006, 01:04 AM
 
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Hi Karry,

Dentists is another big one for DD, who's 4.5. I've taken her countless times to an office that has thjs amazing "how to talk so kids will listen" hygenist and once she did allow the dentist to look at her teeth but not touch them. we tried a new ped dentist who came highly recommeded- she was scared and started to get ouf of the chair and he held her down, to my horror! I was stunned and didnt' say anything right away but I did make it stop. That was one of those moments of feeling like I let her down- where was my mama tiger! its needs to be louder than my codependent southern girl identity! Our next apt, the dentist (who knows my child has SID) kicked us out b/c my children were "too loud" and making the other patients uncomfortable, so we wont be going back there. I'm so tired of constantly feeling the world sees me as a failure as a parent and my child as a brat! I guess this turned out to be about more than dentists, huh?

julie

Anyway, I'm wondering, at what point do we need to bite bullet and have her sedated for a dental exam/cleaning/xrays?
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#86 of 241 Old 08-17-2006, 01:28 AM
 
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Jewelie, I'm sorry you've had such bad luck with dentists for your dd. The first two times I brought Lucas to my dentist he wouldn't cooperate. He wouldn't open his mouth and fought the hygenist. It was night and day when I took him to the ped dentist. He opened his mouth and let her do x-rays. I was amazed. They were able to do all the work and cleaning while he was under the sedation. If you lived near me I'd recommend this office. Are there other pediatric dentists you could try?
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#87 of 241 Old 08-17-2006, 01:51 AM
 
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Originally Posted by Karry
I'm new to the thread, I hope you don't mind. My ds is 5 and has SID. He recently had to have lots of cavities filled and a crown put on. I took him to a ped dentist that does sedation. They gave him some oral meds to make him sleepy and then used nitrous oxide. He did fine. I told the dentist about his sensory issues and they said they see kids with SID a lot.
Well, I just have to find a good dentist who is not crazy :
DD will no doubt have to be...well, probably under general anesthesia (which is not so dangerous when you're not talking about sugery because it's a way lower dose and they don't have to be intibated (sp?)). She cannot handle sedation because of her SID. She is so sensitive to noises and everything that she wakes right up. I can't remember how many times he has woken up during tests - scary! Sedation hasn't worked since she was a baby.
Of course we have the added issues of many many surgeries, tests and hospitalizations so she is even more freaked out by anything related to that.

I guess I have to bite the bullet and look into this new dental clinic at the children's hospital. Lord knows that they should know what they're doing, but you know how that goes. Just because they get the job done doesn't mean they do it in a kind way. We'll just have to see.
It will be a while though because dd is having sugery in 2 weeks with a lengthy recovery and that takes priority. It's always somethin' :

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#88 of 241 Old 08-17-2006, 01:59 AM
 
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It's a work in progress. I just don't want to screw her over in the long term.
This says it all. I think it sounds like you are doing a fantastic job. We aren't perfect but we try the best we can each day. Homeschooling and everything else does make it harder. And I can understand her frustration with schedules if that was a bad experience. My kids thrive on them. And it is harder when she can't go out and play. I am blessed that my kids for the most part have thier phsyical health. I forget that sometimes and don't think of what others have to deal with and what I suggest may not be that easy.

Still, I thikn you shouldn't beat up on yourself for the TV. If it wasn't bothering you and she watched all day, then it would be something. BUt obviously you care and are doing your best and what is best for your dd.
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#89 of 241 Old 08-17-2006, 03:52 AM - Thread Starter
 
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I'm trying to remember how we got to the point that DS was not watching so much TV. Earlier this year it seemed he was either always watching it or else thinking about watching it. It quickly becomes an obsession with him, and he is very sneaky so he would outsmart us into letting him watch it. It's embarassing to admit, but for a while it happened all the time. I think we used "no TV today, or no TV for a week" as consequences for almost everything for a while. Since he kept getting grounded, I guess he had to find other things to do - in fact, that's about the time that he became very interested in legos. Once it got to the point that he could go a whole week without TV, then we started using it as a reward, like for getting his homework done. And it is a very powerful reward for him. If you were thinking of trying to limit your DD more, that worked for us. But I feel that TV is there for us moms to use when we need to, and sometimes more than others - we really do need it.
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#90 of 241 Old 08-17-2006, 03:15 PM
 
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I dont have time to read through the whole thread right now, but I would like to suscribe to it if that is okay. My 27 month old dd, has alot of sensory issues, communication issues and may possibly have PDD-NOS (not sure when/if we will get an official ASD diagnosis). We have started EI therapy a few weeks ago because she is has a receptive/expressive speech delay and a bit of a cognitive delay also which at this time we are thinking may stem from her sensory issues. She has an appt next month with an OT to get an official SID diagnosis and see what therapy they can offer. I think she seems to be both sensory seeking and defensive?? Her EI educator said that it seems that way to her also, and it will just make it a little harder for us to figure out what works for her. She does lots of spinning, running into walls, way too hard hugs & kisses, but also doesnt like socks, things touching her feet and seems to have some oral aversions.

Anyway, I just wanted to introduce myself. I will be back to read through the thread later.

~Rebecca~
mama to a sweet girl , & 4 silly boys

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