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Uno Mas! ArchivesMay 2004 Message Board
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| Name: | steff | ||
| Child: | olivia(6) | ||
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Jackie I'll type down the results now. Sorry got delayed with ...life... it's the responses of 1600 parents surveys of kids with ds. Here goes... Alrighty here goes... Most kids with ds use speech;87-90% of the kids communicate using speech. As children are learning to speak, somne use sign lang. others picture boards and others picture communication systems. sign lang used by 33.5% of kids and is most often used between ages 2 and 7 as they are developing speech. After 7 kids drop the use of signs because they can use speech to communicate. 15% use pictures to communicate 22% use communication boards to commun. 1% use high tech communication devices Most kids with ds begin to speak between ages 3 and 4. Kids who speak before age 4 have more intelligible speech than those who speak at later ages. Age first spoke frequency percentage before 2 18 1.3 2 83 5.8 3 739 52 4 334 23.5 5 133 9.4 6 113 7.9 mean 3.6 median 3 mode 3 This is the results of speech intelligilibility.Its a 10 point scale with 10 being completely intelligibile and 1 being completely unintelligible.The intelligibility rating was 4.97 score frequency percentage 0 7 .4 1 103 6.6 2 156 9.9 3 179 11.4 4 216 13.7 5 267 17.0 6 186 11.8 7 231 14.7 8 145 9.2 9 59 3.8 10 23 1.5 motor planning and oral motor difficulties 60% of kids had diagnosis of oral motor difficulties 15% had diagnosis of apraxia or dyspraxia Occurence of the symptoms of apraxia is correlated highly with difficulty in speaking kids with ds with apraxia begin speaking at a later age mean of 5 yrs. kids with diagnosis of apraxia have lower intelligibility scores. survey results indicated that 46.9% of kids have been diagbnosed with oral motor difficulties 2.3% with developmental apraxia of speech 13.1% with both oral motor and apraxia difficulties and 37.7% with neither.Thus 60% have been given the diagnosis of oral motor difficulties and 15.4% with developmental apraxia of speech. *** It is rare(2%) for parents to be told their child has apraxia without also being given the diagnosis of oral motor difficulties. okay heres more JHackie how much do you love me??? :) QUESTION always frequently sometimes never Sometimes my child can say a word but at other times my child has difficulty saying the same word. 10 27.7 41.6 19.3 My child may unexpectedly say a word or phrase perfectly.But then he/she cabn't repeat it. 10.7 29.7 39.6 18.9 My child is understandable when he says single words but has greater difficulty in conversation 32.8 32.7 23.9 8.6 My child has more difficulty saying longer words than shorter words 36.8 28.3 25.8 7.8 My child has more difficulty speaking when they are using longer phrases or sentences 45.4 27.4 18.3 6.9 My childs' speech is easier to understand when they are saying familiar words 48.3 32.1 13.3 5.1 So though only 15% of parents indicated a diagnosis of apraxia, inconsistencies in speaking were noted by 38-40% of parents as occurring frequently or always Survey results indicated that 37.7% of parents had NOT been given the diagnosis of oral motor difficulties or apraxia. Conclusion is that speech lang pathologists should be evaluating whether oral motor or motor planning difficulties are affecting speech for every child with ds so that the appropraite treatment can be used. Survey states that more boys with ds have difficulty speaking than girls with ds Parents responses to the ? "my child understands more than they can say were as follows 77% always 13% frequently 4.8% sometimes 4.8% never. Thats it folks... Alright before I depart this house of mine had to share a funny. Olivia has to have PURE DARKNESS when she sleeps. WELL the other night I let her and Kyle sleep downstairs. I turned out the lights then Liv yelps MOM MOM.... I says what?????? She says the LIGHT I look over and notice the snake aquarium light is on. I said its okay thats Montys light he needs it... She looked at me made these circle glasses with her fingers around her eyes and said PLEASE MOM NO LIGHT..... MY EYEBALLS ARE TWINKLING!!!!!! hee hee Kyle and I cracked up and with that I turned the snakes light off cause surely we must not let her eyeballs twinkle??? LOL BYE | ||
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| Name: | Angie Email: | ||
| Child: | Jordan | ||
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Hi! I just sent you a private email, check it out when you have a chance. Hope Noah is feeling better soon! Ang. | ||
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| Name: | Joyce Email: | ||
| Child: | Arianna | ||
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I wanted to email you, but I don't have your email address. Could you get it to me. I was just wondering about the upcoming trip. I did not see any response to my question. Could you please contact me? Thanks, Joyce Soto | ||
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| Name: | Teresa Email: | ||
| Child: | Sara | ||
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| Name: | Rebecca Email: | ||
| Child: | Noah | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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JACKIE!!!! I will post up the results of Miss Kumins survey in a couple hours. K???? Kyle is home sick and man this girl doesn't seem to get a minute to herself theses days. Kyle promised me I could have a break and when Liv is at her afterschool program I will post it about 3 30 pst. Basically its the results of 1600 parent surveys regarding their childrens speech intelligibility and also about apraxia.SO it gives the NORMS and percentages of all the parents surveyed. I'll fill ya in on the answers later K???? Oh yea Jackie they are redoing Livs test on the 9th this time they are doing the FASTING one cause the endos concern was the last one she had already eaten breakfast and lunch before they drew her blood. Can ya ask Ed if this test comes out fine and pretty normal could it be that she is not diabetic cause she had eaten lots already before her high 220 blood insulin level? Or am I pulling the wool over my eyes and that does not matter. Laast time it was not planned for her to take the test just her thyroid ,but her astute endo thought this would be a good test to do as well...Just curious.So HAPPY for EM and her newfound adventure. My boy Kyle is sooo sick... Has been coughing for the last 7 days but now he is bad says his chest hurts and has been coughing till he pukes up these gian phlegm masses. EWWWW.Guess I gotta take him to the docs if he isn't better tomorrow.Funny thing though he is perfectly willing to go out and play till he coughs his brains out. BOYS!!!!! and you guys he told me something kindaa sad... :( he said some kids laugh at him when he walks up to Liv at school and hugs her. I said what do you do??? he says aww nothing I just continue to hug her and then don't even listen to them. breaks my heart sometimes but thanfully he has a LOTTA friends and a lot know Liv cause as you know I have had almost every 2nd grader at my house at some point this year. Otherwise Life is GREAT jeff will be back soon and I am ready!!! Its MUCH MUCH harder than it used to be lemme tell ya... BUT they sure are growing up. Kyle is in 2nd grade wears a 4 and a half shoe and won't be 8 till sept and is BUM BUM BUM 5 feet tall... hes soo grwon up these days and whatta good good kid. hope all is well and CONNIE is your house done yet??? HUGS steffBYE | ||
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| Name: | Adrienne | ||
| Child: | Russell | ||
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A. | ||
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| Name: | jackie | ||
| Child: | emily age 24 | ||
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We had a great Vegas trip...but sadly didnt win any big jackpots...altho each win of 20 or more Em equated to a jackpot...LOL...it was mega fun and we did indeed really surprise David on his 30th by sneaking up on him at a slot machine in the Venetian. Susan and crew...had another fab meal at Margarittaville. Em also found an Elton John shop newly opened at the MGM Grand and when I get home I will post her with her purchases. STEFF...the main reason I am posting is to ask you or someone to post the survey on speech...its still about my favorite topic with DS and am curious to see what it says. Hope everyone is having a nice summer...school here is out as of yesterday so I am babysitting and we are painting rocks to make fish....didnt realize tho that the kids were trotting down the street and stealing the stones from their neighbors garden...LOL. | ||
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| Name: | Robin M | ||
| Child: | Maggie - 3 years old | ||
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Maggie was recently listed as having the language skills of a 7 month old! Now how many 7 month olds can say "Night-Night, Bye-Bye, Da-da, More", etc.? I say that psychologist was way out there when she wrote that report. But, I do agree that compared to a typical, or any child with typical hearing, she's delayed. But, this report help me to see that most kids with DS don't say their first word till they are 3 and lots of them have apraxia etc. It was VERY helpful to me since I tend to panic about her language skills. Not due to her DS, but because of her hearing issues. It made me feel better. :) You all be praying for Miss Maggie, she's going to have to be sedated and have an ABR to see if she has auditory neuropathy. The best way I can describe what that is, is to say that it's like hearing static on the radio...you can hear the song, but not clearly and it's quite annoying! We're not sure when she'll have the test, but the therapist is calling to make arrangements now. I really hate the thoughts to sedating her, but I guess we gotta do it. Take care every one. I love the pictures! Robin M | ||
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| Name: | Debi Email: | ||
| Child: | Gabe | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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Hey ? for ya... Did any of you do the survey and stdy with Libbie kumin on speech intelligibility??? Just curious. I got the results today of the results of the parents surveys and some other stuff. They show where most kids with ds are at typically with speech intellig. Later if I have a moment I will copy some of the results off. Not copy actually type em.LOL...Wish my scanner didn't BLOW... Well Liv is officially 2 pounds lighter and grew an inch since her last visit.I thought she looked taller. This last month she grew a whole inch. Shes now 46' tall at 6 yrs old.The 9th we go for her endo and bloodwork Cross those fingers. I have had to be the drill sergeant lately and get on EVERYONE who is with her a lot cause her beh ...YIKES!!! Actually today she was amazing for me. She's so funny cauise I say to her LIV after the docs if you are good you can watch the barney I taped today but what do you hafta do??? She says in this MONOTONE KINDA LOUD VOICE...LISTEN AND FOLLOW DIRECTIONS... Sounds just like her teacher at school. LOL I told her today and she cracked up.anyhow must go I have an hour of respite left and must get everything done so I won't be so rushed and nontogether feeling in the morning. Gotta jet BYE | ||
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| Name: | Adrienne | ||
| Child: | Russell | ||
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Russell's IEP was in May.. went well actually... I didn't think it would and the "minutes" they thought were enough got UPPED by a lady at my IEP.. the coordinator for that school (russell is not going to our home school) was SHARP as a tack and upped all his minutes!!! She was a bit brash but... heck.. Russell got MORE than enough minutes!!! Hang in there Robin... Hello to everyone else... it's been WAY too long... been having a really rough year with Regan... I do talk to Susan still though through IM on Yahoo thank goodness... :) Hugs A. | ||
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| Name: | Susan | ||
| Child: | Emily, age 12 | ||
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~ ROBIN: FANTASTIC news!!! Well.....I know endometriosis is not exactly fantastic, but is WAY better than what you feared. I'm keeping you and Chase in my thoughts and prayers on Thursday. Surely the doc will be able to change his meds for the better this time!!!! ~ DOLLY: LOL to being in the freezer!!! Last year, Emily and I got caught in a bad storm while in Sear's. All the ladies got taken to the restroom, and it was so crowded we could barely breathe!! Emily was just fine till some of the ADULTS started acting terrified. It seemed like we were in there for a lonnnnnng time!!! ~ WTG OLIVIA!!!!! Better get the kids up and moving. Only 4 more days of school. YES! Susan | ||
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| Name: | Christie | ||
| Child: | Christopher | ||
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ROBIN OMG Girl I have noooooo idea what "endometriosis" is BUT it sounds soooo much better then what you were worrying bout girl. Can they do something for it for you?? Soooo HAPPY to hear Dave now has a job :-D Just remember what I told you girl, Jersey is the place to be for plumbers OMG girl they are truly in demand and in case I didn't mention the house just 3 houses away is for sale at the moment :-) STEFF ~ YEA for Olivia on losing weight girl :-D I second Robin and I am truly IMPRESSED that Olivia has a handle on what is healthy food and what is not. Noooo way Chris has that concept down yet. Luckily we have time to work on that as he needs to put on a few pounds at the mnoment. Keep up the GOOD work LIV ;-D KATHLEEN ~ Man girl we have to get you back on the BB, you are soooo missed. Hmmmm I can't understand why in the world you can't post there. You know I can't even imagine WHAT a child could do that may get them suspended from the bus :-( Man, girl one year I had an aide say to me "Chris will not stay in his seat" Hmmm so what the heck, if he did she would not have a job ;-) LOLOL GLAD to hear you have a SUPER Principal :-D DEBI ~ were you guys affected by the storms??? Post up girl and let us know you are OK PLEASE HAPPY HAPPY Belated Birthday to STEVEN, hope it was just a WONDERFUL day :-) K, its late and I am beat beat beat, wishing you ALL a WONDERFUL Week CC ;-) | ||
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| Name: | Becky Email: | ||
| Child: | Justin 3 1/2 | ||
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Hope you have a great one, big hugs to you form Becky & Justin | ||
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| Name: | Dolly | ||
| Child: | Eric, 3 yrs..almost 4! | ||
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Okay, did you whoosh all those bad storms Michigan had across here to Ohio? We had severe thunderstorms and tornado watches for 3 days. Friday I decided to go to SuperKMart for some stuff. There was a thunderstorm warning, but I figured it would be fine. Well, while in KMart, the lights went out. We all looked outside and the sky was black and the wind was really whipping things around. All of a sudden the manager of kmart makes an announcement that all customers and employes should go to the back of the store and get into the freezer! A tornado had touched down about 3 miles from the store and we were in its path. So I spent some time in the freezer of KMarts...but fortunately the storm disappated and we got out of there. I made a beeline home and joined the family in the basement. We had another watch last night, and we are under another watch today. So Robin, quit it already!! Lets whoosh these storms out to sea or something. I can use a little sunshine this week...Love Dolly | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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hugs, Robin | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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Wow, I know I was just hee but lots of POSTS (:-D) and news to catch up on!!! Maria...forget you? Not in a million years!! I cant wait to see pictures of T's wedding! I bet she made one beautiful bride :-) I forgot Steven's birthday, I am sorry. I hope it was wonderful and he got lots of great presents. I wish for him what I wish for all of our kids, a long healthy happy wonderful life full of joys. Does this mean you are coming to Ohio? It is much closer to you. I dont know if Dave can take time off of work but even if he cant I will be there, I'll just convince Chase's aide she needs the etra money so she will come with me to help with Chase. Becky, I have had those special tests you talked about, arent they just the best, especially that yummy goo you get to drink, makes me want to go back for more. (NOT!!) I will hope everything comes out good. I have to take prilosec in the a.m. and prescription strength Zantac in the p.m. to conquer the tummy problems, I hope they find your problem soon. Jenn....Darin is in my prayers,and especially after having just went thru a terrible scare I hope you get the results back fast!!!!!It is awful having to wait for results. BTW...happy birthday to the baby, I cannot believe he is two, seems you just had him a short while ago!! Rooooo......... I remember you! Your my friend that has been mia for a long time!!! I hope all is well and that you love your job! I cant wait to see pictures of Teddy on the new photo page,I hope you took LOTS!!!! I bet Susan is going to wring your neck for being so close and not letting her know so you could finally meet! Oh man, what I would give to hug you in person! Kathleen.... anotehr friend I have been missing! Please tell me you will be at Cedar Point when we get together, please please please. LOLOL to the bus driver and aide, they need to get a grip and I am so glad you have a great principle!!! Laura, are you getting as much rain as we are? this is rediculous! I need Jackie back here so badly! I walk outside after every rain and I swear things are two feet taller, including the weeds! I think I need to give Chase's special ed people your phone number so you can deal with them for me, I am not sure how much I can take anymore. Connie....how is the house rebuilding going? It has to be a real pain but just think of the great results :-D Sus........ :-D :-D :-D :-D :-D :-D Chase's IEP is on June 2nd. His teacher just casually mentioned to me (after the crying yelling, talking it out session we had) that his IEP was on the same day as his dr appt and I said sorry but I guess someone should maybe have mentioned it to me? So it only took her about five mintues to reschdule it for the 2nd. Anyone want to come help us work thru this? I know every year I worry terribly and it ends up ok but this year is going to be a terrible terrible fight. I want him to stay back because his behaviors are so bad right now that I see no way to be successful in the middle school nor any way to deal with them in that school the way it is set up. Not to mention I have NOT given up on the PT, OT and swimming, they may think they won the battle but the war is still on, sighhhhh. I cant wait for Chase's dr appt ...they have got to change his meds, I just dont understand why he is so not willing to change things that are NOT working. Ok I didnt mean to write a book, just stressed I guess. I so wish I could find another child like Chase and a doctor that specialed in retardation, ADHD and mood disorders, dreaming huh? Every dr I psyh I find isnt fimiliar with the retardation part, I know it is rare to have all three but there HAS to be someone out there. Huggers, love and prayers, Robin | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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Robin I guess I should say yay to endometriosis ..hmmm not sure thats so terrific but the latter is much worse. is that why your back hurt??? OH BTW omg you will get a kuick out of this one. Open house thurs night. I go into Livs sp ed room at 7 15 when the classroom visitations are and WHAMMO I am told to sit down by the st . The kids are to sit over and play quietly to the side. The parents are all there the ones that show up. about 5 and the st in all her quirkiness(god bless her soul) has a LESSON for all us parents .She asks us what our role is in the home school connection then goes off writing our answers in on the board. LMAO 45 minutes of this. I had to RUN to Kyles class after this as the thing closed at 8. Thankfully his 2nd grade teacher cracked up when I told her about the 45 min lesson plan us parents had. LMAO... Open house my BOOTY!!! Then we ran to kindy for Livs and they too laughed knowing the "quirkiness of Livs st and sp ed teacher))LOL... K. m,y girl is losing weight!!Shes looking SOOO MUCH BETTER!!!!! Very happy. She even is knowing the difference in healthy and not healthy foods. AND is not eating EVERYTHING for the first time in my life I am hearing I'M FULL MOM!!!!! Unbeleievable. Jeffs in Indy right now all is well.I'm taking the kids to a playground here in L.A. actually inn a few minutes thats the 2nd boundless playground here. Its VERY COOL. And sometimes they bring this dog called wheelie willie. He is so cute the back of his legs are paralyzed so they have wheels on his back legs I think he even has a website called wheeliewillie.com hee hee... Then off to swimming to moms. Gotta git but talk to you all soon. Have a great weekend. Jenn Darrin and the entire family is constantly in our prayers(hugs for strength to you)))) Steff | ||
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| Name: | KATHLEEN Email: | ||
| Child: | Rhienne, 8 | ||
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Robin, my hat is still tipped to you and Dave. You two make me know that I can deal with Rhienne. However, I do believe that Chase has been giving Rhienne lessons in "stinkerhood101." He was about to get kicked off the bus - which would have been a disaster with my work schedule - but the principal - bless his heart (and his master's degree in special education) - laughed at the bus company when he got the referral to suspend Rhienne from the bus. He told them to figure out who the adults on the bus are, and handle it. LOLOLOLOL that is just what I was thinking. Rhienne has been riding a school bus for 3 years. He just decided to see if he could control these people - and he did. Flipped their collective wigs, actually. He is such a manipulator. And they fell for it. The principal and the teachers got a kick out of it. They couldnt believe that the driver and the aide were so bent out of shape. He told me not to worry - there was no way in the world that he was going to recommend that Rhienne be suspended from the bus. That wouldn't have punished Rhienne anyway. It would have punished me. Rhienne said something that we all CLEARLY understood the other day. One of the kids was messing with him, so he said (and I quote) "Get offa me before I punch you!" Life skills. So what if he still puts his underwear on backward. | ||
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| Name: | Becky Email: | ||
| Child: | Justin | ||
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Maria, sounds like you have a full house but sounds like you are enjoying them being there. WTG Teddy and eveyone else graduating(sp) Have a great weekend. Becky & Justin | ||
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| Name: | Maria Email: | ||
| Child: | Steven | ||
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| Name: | Jenn Email: | ||
| Child: | Courtney | ||
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GO TEDDY YOU CAN DO IT... ITS YOUR GRADUATION! YEAAAAAAA TEDDY! | ||
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| Name: | Jenn Email: | ||
| Child: | Courtney | ||
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just had to come whine... my baby is 2 today! I can't get over this...He is talking in big long sentences...I am sad...Do they have to grow up.... oh and HAPPY BIRTHDAY JASMINE! My dh had his full body scan today....so we are awaiting the results.... It may be the middle of next week before we know something. I hope not though.. I hope you all are well! BTW....I love the new photo album! | ||
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| Name: | ro Email: | ||
| Child: | Teddy The GRADUATE | ||
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Teddy Graduates TONIGHT:) For all those who have been there through the tight and good times:) Thanks a million for being there:) Work makes it hard to visit regularly but I do read from time to time:) Congrates to all those who are graduating and those who have jobs:) Way to go DAVE.:) Hopefully I can get back really soon:) Prayers for those who need it and hugs for everyone:) Ro | ||
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| Name: | allisa Email: | ||
| Child: | erin | ||
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| Name: | laurasnowbird Email: | ||
| Child: | Ethan, 29 months | ||
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~ ~ ROBIN: WOOOOO HOOOOOO! I am so pleased to hear that Dave got a job, I've been praying for you guys. I'm happy to hear the other thing wasn't what you feared. You were overdue for some good news! I wish that they could figure out the magic recipe for Chase to help with his behavior issues - I can't imagine how stressful that must be for you. You are pretty patient people, I have to give you that. I think I would flip my dipper if the school called and yelled at me! (That would be really productive, right, LOL!) I can relate to being the "older parent" at the pre-school graduation, although Ethan hasn't started pre-school yet, I know we will be in that category when he does! I took Nick to the college yesterday for his freshman orientation - it literally seems like yesterday that I was there myself! I wandered the campus for awhile, and really enjoyed it. I think it is time to go back. Anyway, I'm too tired to say much else. Good night to everyone and hugs to all who need them. Laura | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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hugs again, Robin | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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Cheyanne, I will keep Noah in my prayers! Hugs to you both. Jackie and Annie....you get no sympathy here but you DO get my hugs and the knowledge that you both made me laugh today and I really needed it!!!!! We have had GREAT news and GREATER news and then we have had grief over Chase and school, and more grief and more grief and more grief, sighhhhh. Great news number. DAVE GOT A JOB!!!!!!!!!!!!!! Cross your finger it lasts for a long long lonnnnng time and thanks to everyone who was praying. GREAT news number 2. I only have endrometriosis or however you spell it, NO CANCER!!!!!! :-D To those of you who knew our fears and prayed, thank you guys!!!! Now...if any one can solve our Chase problems with his behaviors at school, step forward and I wil give you the address and phone number and you can take over cause this momma and daddy have just about had all they can take! Chase is soooooooo bad at school these days (so much for my bragging several months back sighhh) and we get non stop calls from school saying come here at once (no we do NOT go as we do not take well to the school treating US as their students who have been bad) I even had his teacher call me at WORK to yell at me, yes yell at ME because he was out of control and had peed on her floor. I am lost here, the child came with no directions or instructions, what do they want from us? And before you ask, no he is NOT acting like this at home and they get vicious when I suggest it is something at school causing the problems or their reactions to his bad behavior. He just LOVES to get people worked up, he laughs about it(yes I do want to beat him for it and have repeatedly told them NOT to show any expressions, I know it is hard, oh man do I know. So any ways...prayers for this child to regain that short lived good behavior we saw awhile back please? They are already fighting us as they want him to go to a different school so they dont have to be bothered. Sorry for the heavy load I dumped, I just needed a shoulder to lean on and btw.....any one want to give us a break for say a week or two? LOLOL! huggers to all, Robin | ||
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| Name: | Cheyanne Email: | ||
| Child: | Noah, 4 months | ||
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| Name: | Sue | ||
| Child: | Haley-almost 8! | ||
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About Toys R Us and others that use special needs children, my daughter Haley has appeared in the Differently Abled Catalog for Toys R Us 2 times! Once they pay the model, they own the photo and can use as many times as they would like. The agency we belonged to is Beautiful Kids. I'm putting the link below. It was great fun for both Haley and me when she was involved, but there was alot of travel so we haven't been actively seeking modeling. If you live in a metropolitan area, NY/LA you might want to join! http://www.downscity.com/beautifulkids/become.htm | ||
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| Name: | Annie S | ||
| Child: | Sonny 9 | ||
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Another thing Sonny loves to do is turn on the hose and try to get me wet...and laughs then too...I try and get it back and spray him, then he is not laughing..but it can turn into some fun...lol.. Annie S | ||
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| Name: | Barb Email: | ||
| Child: | Alison - 13 months | ||
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Barb | ||
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| Name: | jackie Email: | ||
| Child: | Justin | ||
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| Name: | jennifer Email: | ||
| Child: | matthew 7 | ||
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| Name: | Suzi Email: | ||
| Child: | Merideth 3yrs | ||
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Cheyenne: COndolences & we'll keep Noah in our thoughts as well. I forgot to mention as crazy as it's been. Meri got a phonecall last week.I figured it was a telemarketer when they asked for her but here it was DAFO. I'd helped her do an entry for their contest to design new trim ribbons for their orthotics & they picked her musical themed design as the winner!So, if any of you are picking out trims her design will soon be in their swatch ring. | ||
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| Name: | Fran Email: | ||
| Child: | Juliana | ||
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It's been a while since I've posted. We went to South America for a week, and things have been absolutely crazy & busy around here. It's good to be back & finally getting settled in. We baptized Julie there & had a big party for her. My husband's family is there. They totally spoiled her by holding her every minute of the day! When we got home, I couldn't even put her down without her crying. Everyone there was like "She's so big! Wow, she's enormous!" In the U.S. they are like "She's so tiny. Wow, she so little for her age." Babies are smaller in South America, people are in general. They don't eat like us Americans do! Cheyanne, sorry about your aunt and your bad day. What could happen if the bones close too early? Juliana still has a little bit of a soft spot at 4 months & I was a little concerned about it. We go to the doctor next Monday for shots, so I'm going to ask her about it then. When is it suppose to close? I've been noticing in magazines & on TV that I never see babies with DS in any ads or anywhere. I never noticed this before, but I am so aware of it now. I remember reading some comments here about it a while ago. Who are the advertisers that use kids with DS? I haven't seen any, and it's really starting to bother me. Are we doing anything about this? I would love more info in this area whoever has it. Thanks! I have lots of reading & catching up to do. Have a great day everyone! | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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I will keep Noah in my thoughts and prayers. Did your doc mean surgery on his skull would be more risky due to the Down syndrome? I know there is a risk with any surgery, but kids with Down syndrome unfortunately go through heart surgeries really often and amaze us all by how quickly they recover. I'm sorry Noah will have to go through this, and I'll be praying for him. Susan | ||
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| Name: | Cheyanne Email: | ||
| Child: | Noah | ||
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Boy today has been a bad day for us here. I received a call telling me my aunt died from a brain tumor then I took my 4 month old son to the doc and was told he has trigonocephaly which is a triangular shaped head where the bones close too early. I've been sitting here praying. The doc told me that because Noah has Down syndrome it makes surgery risky for him. She is setting up an appointment to see a pediatric neurologist. | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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Hmmm, Ms. CC....... I have a large OLD bone to pick with you. Seems your partner in crime couldnt keep it in and confessed you and she were referring to my AGE and insinuating I am as old as the hills, completely forgetting that you are BOTH much much MUCH older then myself!!!! Just you wait girl...just you wait :-D I do want to talk to you, are you sure yours and mine were the same? I cannot imagine doing this twice or fretting twice like I have been. I'll try to give you a yoohoo (got that from your counter part in crime) when I get home from my meeting if it isnt storming out again, we are under yet another watch. We have missed the bad stuff (tornadoes) by a couple miles both times, pretty scary I have to admit. Anyone up for some weeding????? hugs, Robin | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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| Name: | laurasnowbird Email: | ||
| Child: | Ethan, 28 months | ||
| Comment: |
~ ~ OH! Barb, did you get my care package? | ||
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| Name: | Jackie Email: | ||
| Child: | Justin | ||
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| Name: | Barb Email: | ||
| Child: | Alison - 13 months | ||
| Comment: |
The first thing I have to say is Thank You, Thank You, Thank You to Michelle MC!!! I love having the photo album back and seeing how much all of our kids have grown!!!! JULIE: My oldest daughter (non-DS) was born 6 weeks early and weighed 5lbs 15oz. I cringe just thinking about what she might have weighed had she been full term! ANNIE: Glad to see that you all had great weather for your daughters wedding and I can't wait to see a pic of Sonny in his tux! I'll bet he was quite the handsome young man! OK, all you kids out there in Michigan check in so we know that you haven't taken a trip to OZ with Dorothy and Toto! Hugs and Prayers to all! Barb | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
| Comment: |
ANNIE HI!!!! CONGRATS and wanna see Sonny tux pictures soon. MICHELLE thanks for the photo album very cool. You guys my graphics on this puter I can barely see anything till I get a real card so forgive me for no comments not sure what I can see to comment on.;( But will real soon get that graphics card. Liv lost her first tooth. She musta eaten it with her tuna sandwich sat. TOLD YA she'll eat anything!!!LMAO!!!! She told me MOM I'M ALL GROWN UP NOW!!!! proud as all get out. But then again she tells me in the morn when my hair is wet after a shower...MOM YOUR HAIRS ALL WET and won't go near me. BUT when its dry she gets a HUGE grin and tells me MOM YOUR HAIRS ALL GROWN UP NOW!!!LOLOLOL...gotta git talk to you all soon steff | ||
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| Name: | TriciaF Email: | ||
| Child: | Patrick 4, Connor 10 | ||
| Comment: |
Jackie, I am so sorry to have missed Emily's birthday! Tell her Happy Belated from me. I hope she got some new CD's. What a summer she is in for! I know she is up for it. Sorry to be missing in action so long, I have tried to keep up with reading but am sorely behind on that as well. But ....MICHELLE.....YOU ARE WONDERFUL!!!! We love the new photo album. Now I guess I'll have to learn to use the darn thing and get my Vegas pictures developed. I love all the pictures guys.....I have missed seeing those beautiful faces. Life is hectic, my dad is doing better in the nursing home at his rehab...coming along very slowly. We just take it a day at a time. I am really excited, we are getting a new puppy tomorrow. She is flying in on the plane from Wyoming of all places. We can't wait to get our hands on her. Check her out here: http://www.balticpoodles.narod.ru/puppies1.htm She is the little girl at the bottom of the page sitting on the table cloth with green leaves. Also, we attended an event today that reminded me so much of our unomas Cinninnati get togethers. We decided that just getting everyone together for Buddy Walk once a year was not enough and that we should start trying to have some social gatherings that were lower key and allowed for families to visit and talk. So last year we had our first Buddy Walk picnic at a local park using the Buddy Walk mailing list. Today we had the second one and the park now has a sprinkler water park (not as nice as Ohio but we'll take it). We had about 14 families including some little bity new babes with Ds. It was great fun. I got to meet Donna and her son Tyler who have been visiting unomas lately. Next, I am hoping we can do a dance with a DJ. It would be wonderful to have something every quarter. Connie, glad you guys are back in your home...even with all the work, its probably a relief. I'm gonna get my behind in bed, they have worn me out today. Happy week unomasers! ~Tricia | ||
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| Name: | Susan | ||
| Child: | Emily, age 12 | ||
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THANKS MICHELLE for getting the photo album back up and running. Susan | ||
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| Name: | Annie S | ||
| Child: | Sonny 9 | ||
| Comment: |
Connie so glad you're getting back in you home ...fire has always been a fear to me since Iwas a young girl..glad everyone was ok Susan glad you had a nice trip...your sure turning into the traveler...lol Well we finally got my daughter married yesterday..It turned out wonderful ...but it was so much for I did every cooked decorated ...Now I can finally get my house in order..Sonny looked so cute in his Tux..will have pictures soon...My knee is still taking so long to get better of coarse this wedding put alot of extra strain on it...but it is improving slowly.. I seen there was a bad tornado in Mich. hope all of you weren't in that... Oh man Steff behaviors have always been one we fight with Sonny he still will flop once and awhile...He is really into the crying thing lately...seems to break down crying when things are rough...or he doesn't get his way.... Take care all Annie S | ||
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| Name: | Jenn Email: | ||
| Child: | Courtney | ||
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He was on track to be huge...I have 2 neices that were 11.7 and 11.2 THANK GOD he came early! OUCH! | ||
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| Name: | Julie Email: | ||
| Child: | Jordan | ||
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Jordan started school this term and is doing brilliantly, all of a sudden the chatter is coming. Where did he learn all these new words I'm wondering? Maybe he's been storing them in his grey matter & decided to use them now that he's a "Big School Boy".LOL He got placed into a special class, there are only 8 kids and 2 teachers, so each child gets a lot more one-on-one. Great huh? Does anyone else have a child in a special class, or are they integrated into a normal classroom? Every Thursday, the teachers take the kids on some kind of excursion. One week they went to the local playground, the following week caught a tram down to the beach, and the kids ate their recess and then caught the tram back to school again. The kids absolutely love this. Fri afternoons they go swimming - Oh and Mondays they cook a special lunch. Every day something new to look forward to. When Jordan first started pre-school, he took about 5-6 weeks to settle properly and wouldn't eat at all, now with school he was eating by the second day! Just shows that my baby is not really a baby anymore. Speaking of babies - I've got a beauty to tell you. My sister-in-law gave birth a week ago to her 3rd boy. Little William was 7 weeks early, have a guess what he weighed....wait for it.....6lb 8oz! The doc reckons he would've been 12lb if he'd gone to term. But he's doing great, still in a humidicrib, but thriving. Anyone else had a premmie that big? | ||