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Post by TriciaF on Mar 17, 2005 0:08:11 GMT -5
Hey.....I am with you....very resistant to routine. Anything that I do must be tailored to me or I will rebel. Try the flylady site....she has a pretty flexible approach. You can read it all on the site....or buy the book, Sink Reflections. I did both and I really like the book. I don't follow all the rules....but they do make some sense to me and I have altered my attitude toward housework a little. I tended to be a frustrated perfectionist.....and since it was never perfect....just didn't see the point!! LOL. Alos, I have finally gotten out of the mindset that routine cuts into my free time. Now, I realize it allows more free time. Flylady has a saying, I don't remember it exactly...but something along the lines of ...even imperfect cleaning blesses your family. www.flylady.com/index.aspwww.flylady.com/pages/FlyBaby_Preschoolers.aspI still struggle with routine...but this helped me alot to get motivated. And...of course....I heard about it the same place I get all me good advice...here at Unomas!
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Post by TriciaF on May 19, 2005 4:35:42 GMT -5
Well Ms. CC....I'm sure I won't be telling you anything you haven't already thought of.....but if the programs/schools you will be visiting will be for a relatively long term....several years.....then the temporary upset could be well worth it in the long run. Think how nice it would be to know that his school would not change for a few years. whew. If the environment is considered by Chris to be more "adult" or grownup or whatever, maybe he would be excited too. I think if its appropriate and you have pretty much decided its a go, taking Chris to tour and getting his involvement would be a good thing....see how he reacts. Course, you would know best if this is the thing to do with Chris or not. I like the idea of visiting after it starts....otherwise how can you possibly know now......especially if this mix of kids are going to be with him for quite some time.
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Post by TriciaF on May 17, 2005 19:17:19 GMT -5
Hi guys....saw the behavior threads and thought that this was worth posting. It was written and developed by Dr. W Mark Posey, USC School of Medicine (thats South Carolina to you left coasters) LOL
Anyway, he is a great guy and is the Dr that recently did Patrick's first psychological. He handed this out at our recent Ds conference. I hope he won't mind my sharing with you folks- properly referenced of course. 1) Parents should not judge their parenting skills by their child's behavior.
Parents cannot control all behaviors that their children choose to do. Children have their own minds and will often do things that do not please us despite our best parenting efforts. However, we can control how we react to their misbehavior. When we are judging how we are doing as parents, we need to look at how we "react" to our children's misbehavior; this we can control, our children's behavior we cannot. We need to ask ourselves: " how are we doing and what are we doing when our children choose to do something that is wrong/inappropriate"? 2) Their child does not have to love them in order for them to be doing a good job.
We want our children to love us, this is every parent's desire; however, it should not be the goal of parenting. If having your child love you is the goal of your parenting, then you will base your decisions (discipline) on whether or not your child will love you after you tell them what has to happen. This is a recipe for disaster. Keep the " I want them to love me" a desire, never have it as a goal. If you do not keep that perspective you will never be able to make good/appropriate decisions.
3) Not knowing or understanding where it is that you want your child to end up.
Many parents parent for the moment; sometimes it may be seen as " for survival." It is best that you keep in mind where you want your children to end up as they get older and leave you. You want them to be independently functioning...are you guiding/directing them in this manner or are you doing more for them than you should because you find it easier? When you teach, direct, guide, discipline keep in mind the end goal is to have them functioning well as independent adults. 4) Not understanding child development. Parents often find themselves "getting onto their children" for things that may be considered developmentally appropriate for them to be doing (or not being able to do). It is very important to understand what and where your child is developmentally and what is expected (or not expected) of someone that age. 5) Not practicing at home what you expect them to do in public.
Children do not often possess that instant on/off button for changing behaviors like adults do. Thus, it is very important that parents practice (and make them perform at home) those things and behaviors that they want them to perform in public. Parents should not expect them to do in public what they did not perform regularly at home. For example: do they run in the house? Are they allowed to get up from the table during meals without permission? Do they use good table manners at all meals? If they do not do these at home, do not be surprised if they do not do them out in public. 6) Not modeling what you want them to do. Many parents use the saying, "do what I say, not what I do" as their modus operandus (normal way of functioning). Children learn a lot by listening to what you say, but they learn much more by watching what you do. So, the best learning will occur if what you are doing matches what you are saying on a daily basis. If you are telling them to clean their room, is your clean? If you are telling them not to use certain words, do you sometimes use those words? If you tell them to treat others respectfully, do you? If you tell them not to lie, do you (when someone calls, do you tell them to tell the person that you are not at home? Why not just say, "tell them I will call them later" or "ask them if they can call back(at a certain time)"? 7) How parents react to the behaviors.
Parents will often avoid dealing with behaviors that need to be dealt with immediately due to being too tired, not interested in a confrontation, or not knowing quite what to do. There are also some other concerns:
Parents sometimes fail to reward good behavior. The child has finally cleaned their room; you notice it and fail to encourage/compliment your child.
Parents sometimes reward bad behavior. Your child is watching TV. You tell your child it is time to turn off the TV and get ready for bed. Your child has a temper tantrum and you give in. You have just rewarded bad behavior.
Parents sometimes punish good behavior. Your child has finally cleaned their room; but you go in and tell them all the places that they did not put things instead of complimenting all the good things that you see in the room. Parents sometimes fail to punish behavior that requires some type of mild punishment. Punishment for some behaviors helps a child learn the value of certain deeds. If a child hits another child and the child does not get punished, the message has just been sent that hitting another person is "not that big a deal" - they are likely to do it again when the situation calls for it. Or, if the punishment is too mild for the infractions, the child will not get the message that what he/she did was a major offense which you to not want repeated. 8) Afraid of disciplining because of the different special needs involved with the child. Parents who have children with special needs often treat them more carefully than they need to. The job of a parent is to certainly care for their child, but it is also to raise children who will grow up to be as independently functioning as possible. By not making a child do things that they are capable of doing, even if difficult, is further handicapping a child from being all that they can be. This is often a very difficult task for parents of children with different types of special needs, but is is absolutely necessary to help the child to a more functional and independent adult.
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Post by TriciaF on Jan 8, 2005 21:46:56 GMT -5
Simply WONDERFUL ;D Ain't all this modern technology grand Scaring moms all to death....and the rest of us, too. Well, Jackie, I hope this has given your sis and niece a new appreciation of Ds and your's and Emily's experiences.
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Post by TriciaF on Jan 8, 2005 21:45:34 GMT -5
Simply WONDERFUL ;D Ain't all this modern technology grand Scaring moms all to death....and the rest of us, too.
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Post by TriciaF on Jan 8, 2005 21:43:14 GMT -5
LOL! I guess I will jump in and show my age...but we have used this all my life. Its kinda meant to be a bit sarcastic when people are making things much harder than they need to be....or over thinking, over analyzing etc... It was always... Keep it Simple, Stupid! or KISS I think the Sweet and Simple must be the updated politically correct version! LOL
Also, I would think that listening well in small groups means he is attending well and paying attention when sitting in the small groups for story time or instruction, etc. Sounds like your teacher is keeping you informed and that is wonderful.
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Post by TriciaF on Jan 8, 2005 22:04:03 GMT -5
Tammy, Grrr.... I think you just let it go and keep smiling. I won't say its a steriotype, but my sis-n-law's mom is german and she will also say whatever is on her mind immediately as does one of her german daughter in laws. I used to get very offended at some of the things that they would say....but I know them well enough now to know that they are not intending to offend. And again, maybe be an unfair steriotype, but they are both what I would call "clean freaks"....can't rest, sit down, do anything fun if the house is not completely in order.
I have a neighbor, not German by the way, who can't stand her yard to be less than perfect. She uses a leaf blower to clean her yard, her driveway and then she goes out and cleans the entire street in front of her house. I have known her to clean parts of her neighbors yards and even the street next to the woods two houses down because she just can't stand it. I would say its a bit compulsive...but then....my house could sure stand some attention! LOL To each his own.....I just prefer to spend time enjoying life.....and sounds like Lewis has that part down perfectly well. By the way, in my experience....the "clean gene" and the "messy genes" are inherited and they don't mix very prettily. My clean gene sis-n-law and her messy gene (from my side of the family) daugher (age 30) have been fighting the same fight over housework for all of those 30 years.
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Post by TriciaF on Jan 8, 2005 21:49:38 GMT -5
I too, have a friend with a son with Ds and diabetes. He is a little fella, exactly two days older than my Patrick. They will both be 5 in April. He is in Patrick's class at school. I as sure his mom would be happy to talk to you as well, if you get that diagnosis. Good luck to you guys and keep us informed.
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Post by TriciaF on May 15, 2005 7:26:01 GMT -5
Since we are in limbo waiting for things to happen before we can have Patrick's IEP....I have been starting to look at his goals. There are so many and I just bet that the IEP has only just soooo much room. Never having done one, I am not sure what to expect. A friend gave me a copy of her daughters from last year and it looked as though they picked about six goals in various areas....so it appears that you really have to narrrow things down. She gave me a list of goals that I guess they picked from.....the skills started very easy and then progressed. The sheet had pre-school goals written in someone's handwriting. Our state department of education has standards on their website for each grade starting with Kindy. Here's a link in case anyone is interested. www.state.sc.us/eoc/guides-to-scc-standards.htmWell, I stand corrected. In exploring the site somemore...I did find preschool objectives...just hard to pull out as they are included in each different subject objective below. Mmmmmm... www.myscschools.com/offices/cso/ Another question I have is ....I have been told by other parents that the district now has the IEP form on computer, so is the IEP form a standard, national form, or does it vary state to state? Seems to me if its available on computer....the schools and parents who weren't threatened by it could work more efficiently together before an IEP. I kindof feel like Susan said.....I am afraid that I will miss something by not knowing whats available. It won't be the first time either. Example: In our area kids can qualify for a PCA personal care aide to come into the home during the week and help them work on self help goals. I had asked my EI about the program several times over the years and been told Patrick did not have the medical issues to qualify. But, in my moms night out group, several moms of children with autism qualified and their children did not have additional medical issues either. So....the end result was that we were qualified for 10 hours a week starting two months ago. Had I explored this further.....we could have qualified years ago. So aggravating.
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Post by TriciaF on May 15, 2005 6:52:30 GMT -5
A- ain't it great when they surprise you! If Russell only knew what you have in store for him...LOL....he would have waited you out a little longer on the floor.
I have to tell you all a story that my neighber down the street told me. Her son, Chris, has Ds and is about 25 or so now. When he was still in school, the teacher had him working on something one day that he didn't want to do.......so....he told her, "I can't do this, I have Down syndrome". LMAO Smart cookie....but the teacher didn't swallow it. LOL I think of that story everytime Patrick whines to me.....I caannnnn'tttttt. Happy Sunday.
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Post by TriciaF on Jan 3, 2005 10:23:45 GMT -5
Hey Jackie, Life has me strapped for time recently...but I have been popping in for an update on your neice when I can. Just wanted to say I am sending prayers up immediately. I think of you all often and wish I could be here more...hopefully when school starts back. I'm so sorry she has had to go through all of this worry in her pregnancy...esp her first. She and the whole family surely deserves some down time and pampering. I know that Patrick's head has always measured small...not sure if he meets the medical measurement for microcephaly or not....but I wonder how accurate these things can be in utero.
Hugs to you all.
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Post by TriciaF on May 14, 2005 18:11:15 GMT -5
Hi again, I'm sorry you are going through this ordeal. You will be the only one who will know what the right decision (to have the amnio or not) is for YOU. But, it sometimes helps to clarify your thoughts by listening to others and seeing if those comments feel "right" to you. It is an emotional time and that can make decisions more difficult.
I was given a 1 in 13 chance of Ds from the genetic couselor based on AFP results and my age. Nothing really showed up on the high resolution ultrasound other than a nuchal fold measurement in the borderline reading. Like you, there was no way I would ever terminate. I did not want to do the amnio.....although I must say I felt the counselors were really pushing it, which made me angry. The statistics they gave me on the risk of the amnio were somewhere around 1 in 250, if I remember correctly.
But, I knew that the decision was right for me....that I was not going to be obsessed with the though of Ds through the rest of the pregnancy.....and I really wasn't. There was one day that I had a Ds day...long story...but I believe that was a little something God put in my path to use later when needed. So....whatever you do....and if you choose to leave us for awhile and enjoy life without worries.....just know that we are here and if you should need us later....come on back. Either way.....things will be good, your baby will bring you love and joy and teach you about life all over again.
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Post by TriciaF on May 14, 2005 16:53:58 GMT -5
A- That is wonderful! I think its so cool when you can "see the wheels just turning". Its hard when they can't tell you whats going on inside....you have to become a bit of a detective. Way to go Russell!!!!
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Post by TriciaF on May 14, 2005 18:18:16 GMT -5
Jackie....thanks for the info. Curiosity was killing me. It sounds like the experience was great, training was wonderful, weight loss was awesome and it was the natural end of one chapter and the beginning of another. With her new independence, sounds like Emily and you all have raised the bar again. I will eagerly await the next installment.
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Post by TriciaF on May 13, 2005 21:23:40 GMT -5
Elizabeth, Welcome and congratulations!!! We're happy you found your way here. One question though, was your diagnosis a certainty? Did you have an amnio? I ask because the genetic couseling and the triple screen are just that...screenings....not diagnostic tests. We also had an AFP come back as an indicator and went through genetic counseling and were given a 1 in 13 chance of Ds. However, nothing was definite until our son was born.
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