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Post by TriciaF on Jun 23, 2006 20:55:23 GMT -5
Great article...thanks
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Post by TriciaF on Jun 26, 2006 2:48:06 GMT -5
Thanks guys for the ideas.
Pat, do they make any rubber pants big enough for a 6 year old? I have tried big boy underwear the last few days during part of the day while we are home....no luck....Patrick just doesn't really care if they feel wet...but ...I think if I had the plastic pants....Mom could hold out longer.
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Post by TriciaF on Jun 23, 2006 11:41:56 GMT -5
OK...I am replying to myself....is that like talking to myself? Self talk? ;D No, seriously, I started searching the web....as all my old research and files disappeared when my computer was stolen. And by golly, I thought we had seen and tried it all. But, I just found this article and I don't think we ever tried this approach....only half of it at a time like the author did before. And I have hope it will work in that the pyschologist deemed Patrick a "strong-willed child" LOLPIMP. But, that would also describe my older son, myself, my husband, most of my family. We have a stubborn streak a mile long.....tell us not to do something or that we can't and watch us go into seige mode. Luckily, I have this gene cause I will outlast my kids when needed. Hubby on the other hand, can't hang. Here it is: www.lindamoran.net/betterlate.html and some Q & A: www.lindamoran.net/fanmail/potty.htmlOther articles: www.ideallives.com/articles.php?a=read&aid=300OH my....there is a book....and a video....who knew? www.eplibrary.com/pottylearning/
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Post by TriciaF on Jun 23, 2006 10:29:35 GMT -5
OK....this is growing out of the pool issue...but like Cindy (I think) suggested....why has no one done a book on this? We have a statewide disabilities library located in our town and the librarian is very involved with all disabilities and has spoken to our Ds group. He gets daily calls for info and research and he mentioned that the number one topic he gets requested is without a doubt..... potty training.
So...I know we have had this discussion in the past....but maybe we're up for a few refreshers.....Tracey mentioned that she and her son's teacher have a plan for the upcoming school year. Tracey, I would love to hear it....as this will again be a HUGE issue for us and Patrick and his teacher have never met...she was not at his IEP. The plan is for him to start her class, be observed by the pyschlogist and have another IEP 3 weeks after school starts. But, obviously, we need to have some plan, even temporary in place during that time....what will you be trying?
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Post by TriciaF on Jun 23, 2006 10:08:00 GMT -5
Guys, I just saw where Ashley, a mom fairly new to Ds near our town, posted a few weeks back on the Message Board. I am pasting her message here and will call to let her know to check for responses. I'll let her share more about Tye. Thanks Ashley Gillespie Email: contact Child: Tye gillespie Comment: 240 Sunday, 11 June 2006 - 01:53:10am Hi I didn't want to tie up to much space with this, but I just wanted to let everyone know I'm new to the site and would love to hear from everyone.
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Post by TriciaF on Jun 23, 2006 9:53:11 GMT -5
Jeff.....Good morning to you. Glad to see you. I really think you're coming at it from another angle now. ;D It is like not playing on the playground. I live in South Carolina....and while not Florida, its not far off. Its super humid here and to be outside during the day in the summer can be miserably hot. We don't have indoor pools...so pools and swimming figure very highly in the summer culture. Most kids are taking swim lessons or are on swim teams. Everybody has "swim bithday parties" and the July 4th celebration is held at the house of friends with a pool (who live on a lake!). When my older son was on swim team....that meant being at the pool daily for 5-6 weeks. You literally cannot sit beside the pool and bake without heat relief, and staking out the girl's dressing room with a boy in tow....even one with Down syndrome, would be frowned upon. And I know, not taking Patrick could be an option.....but a babysitter for an hour and 1/2 a day just wasn't practical, not to mention that we usually headed straight for therapy after swim practice. I think all of us struggling with this issue try to be responsible...with Patrick, it has only happened once at the pool where we are members, and thankfully, it was in their separate infant/toodler pool and we were the only ones there at the end of the day. Still it was humiliating and is a major reason I rarely take him in the "big" pool even though it was last year. I have put off swim lessons for him....mostly due to the potty training problem. And yet, swimming could be a place he might shine and be accepted. Of course, I could try to take a hard line with Patrick and say no swimming until you have a BM....but the boy has only had one BM in a potty in 6 years. And the pool is one place where he is pretty much accepted and appreciated by typical peers and I don't want to draw undue attention to the fact that he isn't potty trained. The swim diaper under his swimsuit does that sometimes and four and five year olds can have a big problem with that. It does have an effect on our family, as my husband thinks its great to go to the pool on the weekend to chill and for me...its a headache and pain in the .... , no chillin involved. If I want to chill by a pool, I have to go alone. Ahhhh... those were the days. By the way, we have to pay for the priviledge of belonging to this pool! LOL Is is certainly an area where the Ds changes our lives....and my older son misses out on seeing his friends alot more often. But....this too shall pass......someday....year.......
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Post by TriciaF on Jun 22, 2006 22:46:10 GMT -5
Hey there Cindy,
You're right, I didn't offer a solution....but because I wasn't responding to the initial post. I was responding to this one where Jeff was asking why it seemed OK for someone to respond to him like they did. He asked why people were upset and seemed to be jumping on him.. and I tried to give him an honest answer. I didn't feel I was ripping into him, just said that I felt the response was tacky and would have been offended. In my neck of the woods...that is mild stuff. He started the thread pretty boldly and said he was being talked to like he was stupid.....He felt as though he was being treated differently.....and I don't think he was. His initial response seemed to imply that the question was stupid. If its because sometimes some of us don't get his intended humor...thats ok....we'll learn. But everyone apologized...and Jeff said he didn't mean to be dismissive. I'll take him at his word.
It seems to be trying to have it both ways, criticize people for being sensitive and then be sensitive. If people took offense, they took offense...that doesn't make them overly sensitive...just not the same. To imply that they have no right to take offense....seems to imply there is something wrong with their attitude...not just that its different than your own.
I responded later...cause thats when I saw it..... Jeff has emailed me before and I respect him and what he is doing with his roommate. I want him to belong and be comfortable here....but not at someone else's expense. And I think he didn't get why it could be offensive to many people (not just one) and so was let down when no one defended him.
What I would really hate is that someone reading the post and seeing the response might be fearful of posting their own problems/frustrations/mistakes/fears etc... for fear of being made fun of or belittled. Above all, I would like it to feel safe here. I don't want to come here some day in the middle of unbeliveable frustration over something and get a flip response. Differences of opinon, style, humor...whatever...are needed and should be welcomed...just with respect. Lets see...who was it that said perception is reality?
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Post by TriciaF on Jun 22, 2006 0:23:39 GMT -5
Jeff, I'll just be honest with you....I thought your response was tacky. It wouldn't have mattered if it was you or anyone else, if I had come here for help on this issue and gotten that back, I would have been offended. To me it falls in the category of "if you're not part of the solution, you're part of the problem." My six year old is not potty trained and this has been a huge issue for us....and it can be plenty stressful when you are on constant alert to make sure that your child is not having "accidents" and endangering anyone else. And staying out of the water all summer at the pool with all your kids and family is not a solution....period. But its absolutely no fun to be the one to go tell the lifeguard that there has been an accident...despite all precautions.
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Post by TriciaF on Jun 16, 2006 23:03:59 GMT -5
Oh Jackie!!!! That is too cool. Here's the link everybody. www.woodbinehouse.com/main.asp_Q_PRODUCT_ID_E_1-890627-65-8I want an autographed copy, too!!! I'm not going to be able to get to NDSC this year either, and I am so disappointed. I had my heart set on it...esp since it was in Atlanta. But, my nephew is getting married the 22nd and all my family is coming here for the wedding, then with all the nuttiness that has been going on, home breakin, health issues, etc...I just am too tired to even consider it. But....I was really bummed that I wouldn't get to see you and Emily and maybe meet Ed and Marnie and since your not going, I don't feel quite as bad. And now sounds like Susan may not go either....so....I will just have to start pinning my hopes on another Mom's weekend some time!! Jackie, I am so sorry to hear about Marnie's troubles. It seems so unfair that someone so vibrant and involved should have to face this ordeal. I know its never fair for anyone...but darn it, Marnie is such a special soul. I'm hoping its not MS...but honestly don't know if the alternative you mentioned is better or worse...never heard of it. I saw the thread on your birthday celebration....and am living vicariously....wondering just where do I want to go? LOL How do you top Paris?! Oh, you know where I had an absolutely wonderful time one year? I went with my brother and his family to Oregon and Victoria B.C. It was fantastic. We spent two days at Haystack beach on the Oregon coast, then went up the Columbia River near Portland and saw all the beautiful waterfalls. Then we drove up to Washington and boarded a ferry in Port Angeles to Victoria. Victoria was incredible and the gardens were just unbelieveable. I have always wanted to return. We went in July, not sure what the gardens/weather are like in Sept. though. Here's the link: www.butchartgardens.com/main.phpThe fireworks on Saturday nights were beautiful. Also the city has lots to do: www.tourismvictoria.com/
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Post by TriciaF on Jun 15, 2006 23:37:28 GMT -5
Oh Steff, Just popped in and saw this, my heart hurts for you. I am praying for Jeff tonight, and for you especially. You are standing in the middle of chaos with such grace and spirit. I admire you so....can I grow up to be like you? I hope you can get a margarita break really soon and do some howling at the moon. Love to you all....
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Post by TriciaF on Jun 16, 2006 0:42:28 GMT -5
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Post by TriciaF on Jun 16, 2006 0:27:55 GMT -5
OK...jumping in. I am from South Carolina....home of East Coast Beach music....The Drifters, Chairman of the Board, etc.... Anyway....you don't have east coast beach music without dancing...and the dance is called Shagging. In fact, the Shag is the official (legislature enacted) state dance of South Carolina. Well, in England, shagging has an alltogether different meaning (f***ing)! LOL... A guy I knew had come over from England and was out at a beach music club for the first time and when a pretty girl came over and ask him to shag....he thought he's died and gone to heaven. He did end up marrying her! LOL A movie was made about teen summer romance and dancing in Myrtle Beach back in '89 and I was told that the title, Shag, could not be advertised in England. Not sure if thats true.
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Post by TriciaF on May 16, 2006 23:30:44 GMT -5
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Post by TriciaF on May 16, 2006 23:14:23 GMT -5
Dear, dear Robin, I'm with you tonight. No answers of course, but plenty of prayers. I am in a bad place too, this week, really rough. The kind of times that make you question all your dreams and actions and wonder if your past decisions, that in hindsight may have led down a different path, were made from a pure place. In particular, I have been wondering if I made some major decisions out of fear....fear of the unknown, fear of time running out, fear of failure....just fear. I'm not just doing that to beat myself up, but to be sure if that was the truth then, I want to be honest enough to acknowledge it and learn not to do the same thing now. But, oh....the pain can be unbearable.
Whatever your pain...maybe it can be set aside, sealed off.....just a tiny portion of the day...to allow you some simple joy. Even if that seems impossible....open yourself to it....accept it if it comes your way....and be grateful. Maybe the days to follow, the portions will grow bigger and you will feel the God breezes. When things seem overwhelming and I slide into self pity....I try to be kind to myself. Sometimes...the grief has to just fill you and overflow and spill out. In an interview with Christopher Reeves, someone asked him if he ever felt sorry for himself? I don't remember the exact quote...but the gist of it has stuck with me. Rather than ignoring those overwhelming feelings...he would acknowledge them and give in to them...but only for 10 minutes a day....then no more looking back that day.
At another dark, dark time for me....my sister in law sent this verse, which hung on my mirror for the better part of a year.
Jeremiah 29:11 (NIV) "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
So friend, acknowledge those feelings....know we are thinking of and praying for you, and above all be very, very kind and gentle to yourself...
In the words of one of my favorites:
Max Ehrmann
Desiderata
Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time. Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
Max Ehrmann, Desiderata, Copyright 1952.
I hope the sun shines down on you and your garden blooms with all the love you have given it over the years....I hope the boys hold you and bring you joy. I hope that you feel held by all of us here.
Tricia
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Post by TriciaF on May 10, 2006 23:18:51 GMT -5
;D Hi friends, I am sorry to be soo absent for soo long. I have only been able to read a bit.....just saw the thread on Emily and Collin and Ava Elizabeth. I miss all of you terribly. Can just stay a few as Patrick's IEP is in the morning and I haven't even started the paperwork...yuck. Just wanted to brag about my little man. He lost his first tooth sometime in the early fall and I didn't even know it had happened. I think I found the tooth and put it away...but Patrick had no concept of what was going on...so we didn't make a big deal of it. Well.....what a difference a school year makes . Tonight, my little man before bed is talking about the tooth fairy...and I can understand and figure him out (this is amazing in and of itself). We have a little tooth shaped pillow that grandmama gave his older brother that has been passed down to Patrick. It has a little pocket where you put the tooth. Anyway, I thought he had maybe heard something at school or on the new computer site he had been playing (PBS kids) and that's why he mentioned it...so we got out the tooth pillow and he wanted to stick it under his bed pillow. I reminded him that the tooth fairy won't come until he loses a tooth. He then proceeded to show me his tooth that is almost out. He went to bed and later when Dad came home and went to tell him goodnight, the tooth had come out and was in the bed! So, Patrick got to put it in the pouch, under the pillow. He was all smiles. I just made the tooth fairy visit and am the proud owner of a teeny tiny tooth. So, now the boy knows the ropes and will be hoping to loose more teeth soon. I am so happy for him that he is so excited and really "gets it". On the other hand, I am thankful he still has quite a way to go as far as numbers and money, cause a $20 bill was all Dad had and so I am really gonna have to request a partial tooth fairy refund! Love to you all, Tricia
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