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| Name: | Jessie Email: | ||
| Child: | Jason, 12 | ||
| Comment: |
Jason hated to get water in his eyes too when he started taking a shower . . . which was just about a year ago. But, after having a few too many "accidents" in the bathtub, we ended up making him take showers kind of out of punishment - or maybe "redirection" I should say! LOL Now he doesn't have any issue with it. Funny that he used to freak about getting his face wet when he is like a fish when it comes to swimming in a pool! Go figure, it's probably a control issue. Liv will get used to it eventually. She's so cute, I know if I ever met her I would just have to squeeze her and she would probably hate me for doing it! LOL Jessie | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
| Comment: |
Your words are music to my ears... OH man I know that my and our hard work will help us all in the long run. I should start now teaching Liv to wash her hair. The child will NOT get in the shower. The drama queen FREAKS if water gets in her eyes. MY EYES MY EYES at the top of her lungs . But guess now would be a good time to start practicing. Now how to get her in the shower???? One other thing Susan whats the deal with the wiping thing Liv does it but I go and do it again after her cause she would be some FOUL child if I didn't..hmm maybe too graphic...;) I really liked what you had to say Jessie.makes perfect sense...its hard alright when ya hafta be somewhere and dang kid hasta do it herself and all you wanna do is do it for em and dang gotta count to 10 in my head nope 20 ...awww sheesh 50. LOL....Thats me sometimes people will see me LOL counting to myself somewhere just to take my mind off of how long its taking her and I think they think I'M NUTS!!!! cept the moms they all kinda nod and say KEEP COUNTING...LOL | ||
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| Name: | Jessie Email: | ||
| Child: | Jason, 12 | ||
| Comment: |
I agree with Susan, if you post on the Bulletin Board you will get alot more responses. We go through the same thing with Jason. He might grunt or groan the first time we make him do something on his own, but eventually he ENJOYS doing things on his own. If we would let him cook his own meals he would. However, being that he puts popcorn in the microwave for 30 minutes lets us know he's not quite ready yet! LOL Anyway, my husband told me something when we first met that has stuck with me and set the pace for how I was going to treat Jason and try to push him to be independant. Brian's ex wife (Jason's mother), said the reason she wanted a divorce and that Brian could take Jason is because they were both holding her back from living her life fully, especially because of Jason's needs. However, she never taught him to do anything on his own. So, therefore, she literally was trapped with catering to his every need on his every whim. That would be exhausting for anyone to deal with on a daily basis with no light at the end of the tunnel. From the moment that Brian told me that, I thought, how crazy! Teach him to be independant, take him to public places (restaurants, etc.), do things with him so that he can LEARN how he is supposed to act and how to do things and so that YOU can live your life as well. We can take Jason anywhere now and that was not necessarily the case before. He does amazing things now, pretty much gets himself ready in the morning, sets the dinner table, clears the table, tries to vacuum, makes his bed, etc. All of these are done with varying degrees of supervision, but the point is, we are not having to do every little thing for him anymore. Trust me when I say it is well worth the time and the effort to get your child to learn to do these things on their own. You will free yourself to some extent where you feel like you can breathe - and you will allow him to be the best person he can be. Jessie | ||
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| Name: | Susan | ||
| Child: | Emily, age 13 | ||
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Maybe you should post your question on the Bulletin Board........it always seems like there is a lot more discussion there, and more people will see your question. My daughter is nearly 14 now, and in many areas I am seeing that I have done things for her for years that she has been completely capable of doing for herself. Has she complained about having these things done for her?? LOL Oh no....she loves it! And yes, at times even continues to DEMAND it. We are working on this HARD right now, and I don't think it's too late at all. One example is that she would gladly let me totally help her in the shower! I have continued to help her shampoo her hair, but absolutely insist that she does everything else. And, there is not a single day where she doesn't TRY to get me to do it for her! She will firmly say "No Mom, today YOU do it for me" and I just smile and tell her once again that she's a teenager and SHE is very good at doing her shower. It's odd to me because in some other ways, she is very independent and wouldn't consider letting me help her. (she loves to fix her own instant oatmeal, but doesn't always do a great job of mixing it up before microwaving it so she ends up with little clumps that CAN'T taste good......but she eats it happily and does NOT let me help with it). I've been picking one area at a time and am insisting that she becomes more independent in that area. When we get that area mastered, we'll move on to another. My best suggestion, based on what I've been through with Emily is to just be firm and not give up. (especially if it's something like showering; which she is SO capable of doing!!) Again, please post this question on the BB. I'm guessing you'll get more responses. Hang in there!!! ~ STEFF: Huge hugs to you and Jeff and Kyle! You guys are always in my thoughts and prayers. I hate that Jeff has to go through so much, so often!! Please know we're thinking of you......even when I forget to post and tell you!! ~ Susan | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
| Comment: |
Oh BTW I forgot to add that Jeff is out and done. They had to band 9 which is more than ever but he is asleep like a baby now. Both my kiddos stayed home from school today as Kyle is sick and Olivia had only 1/2 day and we were going to have to take her out early. So we just didn;t take her. So I took Liv to camp before we took Jeff.Kyle tagged along. He has the worst cough oh man its been going on for a couple weeks but today and yesterday it was bad. So while Jeff was in getting his endoscopy and banding I take him to ped. I am not kidding you this child has a BAD pneumonia. Tomorrow he goes back along with Jeff while I take him for his angiogram.The doc who knows all about whats going on with jeff wanted to take blood from Kyle(his first blood test) and redo the chest x ray cause he couldn't believe it was that bad. BUT the med procedures unit called me to say Jeff was done(he hasta have a ride due to sedation) and the ped said. Be back tomorrow at 8 so that we will.ugg can you stand it????? he's down here with me and wow can't believe how much he's coughing to the point of puking. So I am watching him. BTW when we went to see Jeff after Kyles stuff jeff was SOOOO loopy he told me that there was NO POINT TO ME drawing a picture of him hes not himself and I should go back to Notre Dame and HIKE it to ALEX!!!! Kyle looked scared as all get out when he heard that I LAUGHED and said DAD is goofy lets come back in 10 minutes.Then he felt much better.... Nighty night | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
| Comment: |
I know you are talking about laryngmalacia and the 2 are similar in how kids can outgrow it. | ||
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| Name: | pat Email: | ||
| Child: | Cory | ||
| Comment: |
are about younger children. My son Cory is 15 now and in high school. Don't get me wrong I love him with all my heart but his imaturity is really starting to get to me. I had him when I was 41 and now at the age of 57 its getting harder and harder on me to cope everyday. He is very smart must continues to act like a little child, demanding, always wanting everyone to do everything for him. I know we have always babied him and I guess I can only blame myself. But now I am paying for it in a big way. Can someone help me. thanks, pat | ||
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| Name: | Robin Email: | ||
| Child: | Chase/12 | ||
| Comment: |
Anita...keep us posted how your little guy is doing:-) Steff.....awww please give Jeff a super duper Robin and Chase sized HUG from us okay? I sure wish we were closer because Chase just picked my whole blasted garden of daffodils and hyicynths, got himself in trouble in school, saw me crying over it again and ran out to pick some forgiveness for me, grrrrrrrrr, if he wasn't so cute I'd whack that butt for all those flowers! And now they are coming out of my ears in this house so we have lots for Jeff if we could just get them to him!!!!:-D Anyways, you let Jeff know he has been in my prayers for years and I know he will be there for at least another fifty. It has to be so hard on you guys, him enduring all this and you too. I am thrilled to hear Livvie gets to introduce the talent show, I know she will ham it up for everyone. Debi and Christie, Chase is so with your boys, he is wanting school over with and it to be nice so he can ride his bike and play cars outside, two of his favorite outside activities. He lines his cars up single file all across the patio, down the steps and out into the yard, LOL, strange one, that kid of mine:D The behavior intervention specialist in coming May 19 to redo and evaluate what the school and aides have been doing with Chase and see why he has been so LOL, "BEHAVIORALLY CHALLENGED" these last couple months. Debi... I have absolutely no proof on paper to prove my allegations and without those, it is a useless fight. Poor sweet Dave is all for moving these days I think, but I just don't want that to be the reason. I think I saw Christopher Kelly's grandma post about him wetting his pants. We went thru short periods of that too, but we found out it was simply Chase being lazy. He didnt want to take the time to stop playing or to come in and go potty. Once we set a schedule, it solved the problem, maybe that will help? Well, Chase is terroroizing the frig so I need to get out of here. Hugs, Robin | ||
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| Name: | betty lunsford Email: | ||
| Child: | Christopher Kelly 4y9m | ||
| Comment: |
But what I was wanting to know has anyone had any problems after their child was completely potty trained for them to start wetting their pants again. Christopher has be completely trained for almost a year now and for some reason he has started peeing his pants just for no reason other than just not wanting to go...But he does go at school and when we are out which is still good and he still does poop on the pot. But he is such a smart little one even after he has pee pee in his pants he lies to us when we ask him did you pee pee in your pants and he says no...I told my daughter that he has learned to tell a lie and he knows what he is doing because he understands everything the little stinker.. This morning he had went for 3 hours and was still dry and i ask him he he needed to go and he said no but I told him if he would go and potty i would give him a treat and so he went into the bathroom and i followed but he didn't want me in there so i stayed out side the door and he pottied so he got his treat... He seem to be doing good he is still getting speech at school and once a week at the children thy. He really does great with he speech thy at the children thy. But he has had the croup a lot this year and it just about scares us to death when he gets it . They took a light down in his throat and lungs to check everything out and he has laringo mal. something that i can not spell it is a weakness in the voical area that makes him sound a lot worse when he gets the croup. they said most kids out grow it buy 2 years but he still hasn't out grown it ... well got to go i can't belive he has left me alone long enought to write this... betty | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
| Comment: |
I gotta tell you guys that Olivia is doing the announcment in the beginning of a talent show put on by star search at our school. She is gonna say... " Ladies and gentlemen , boys and girls, WELCOME to our talent show." The child is soo funny and dramatic. She's got it down pat and there are gonna be hundreds of people there too. I can't believe how easily she can just stand up in a large crowd and talk. I couldn't do it. I don't even like to do oral reports in class. Do any of you use the curly shoelaces? I love em. I finally said to myself. Okay the shoe tying is NOT working right now and Olivias fine motor skills are way far behind so we stopped working on that and got the curly laces you don't hafta tie. Jeff is not feeling well. I feel so bad for the guy. And he is so sad. Never seen him like this. He thinks he's not gonna make it.I'm at a point where I don't know what to do. He's gonna be admitted to the hospital to be IV lasixed and to do 6 months worth of dental work under general anesthesia. His cardiomyopathy doc wanted it all done this week at once so he hasta admit Jeff cause the waiting list at UCLA dental is 1 year for general anesthesia. Every day he wakes up to get tortured. Tomorrow he has his endoscopy to check for varices cause thy'll hafta band em if they are there cause he'll be on coumadin and the 2 don't mix.Then Friday he goes for an angiogram. Sheesh I wouldn't wanna wake up in the morning. I just am feeling terrible cause he is not himself and really depressed. :( So I am off and runnin. I have 2 classes today one from 10am to 1 pm and the next from 6-10. UGGG I am NOT in the mood. On Monday I went to my class at 3:30 pm and Jeff was really bad that day so I brought Olivia with me to hand in my work and explain to my teacher that I had to leave. Olivia of course was a hambone and my teacher and classmates loved her. She brought her a flower we picked on our walk to my class. I showed he my teacher and she said MS WILLIAMS HI...Asked all my classmated their names and told em all her life story. I've got a flower for you. Luckily the teacher was gonna give us some notes, give back our tests and let us leave cause he mom is in the hospital. So I lucked out in that respect.Well gotta run to class (((HUGS))) and remember to keep Jeff in your prayers. Steff | ||
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| Name: | Anita Email: | ||
| Child: | Jason | ||
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| Name: | Christie | ||
| Child: | Christopher, 12 | ||
| Comment: |
LOL DEBI, Chris is soooo with Gabe, let it be over NOW, LOLOL ;-) CC ~ | ||
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| Name: | Debi Email: | ||
| Child: | Gabe | ||
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Okay if the school district sent Chase home and you think part of that is for retaliation because of your efforts on his behalf file a complaint on that.. IDEA does provide for that also. Send them more paperwork! They love it!!! Hugs and all i know is what Gabe always says about school about this time of year.."Close enough".. lets get to summer | ||
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| Name: | Robin Email: | ||
| Child: | Chase | ||
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thanks for all the words of encouragement. Chase had a great two days off. Jessie, I know what you mean about not comprehending. Chase understood the day it happened that he was in trouble and had consequences but by day two you could not convince him he had did anything bad. I have the number of an attorney I am going to contact to see if he wil come to Chase's IEP. I have dealt with CAUSE before Jesse (Cathy asked me the same question) and Protection and Advocacy Steff. They hae both been very helpful, CAUSE gave me the number and name of the man we use now as Chase's behavior intervention specialist, the school has a contract with him on Chase's behalf but doesnt use him nearly enough, I felt they should of used him for this incident. P&A gave me the FERPA information which I used to file a federal complaint against the school superintendent. Unfortunately I think the school district may have come down so hard on Chase because of that exact complaint I filed and caused the superintendent to get his hands slapped. Chase's IEP has to be done wihtin the next month and it wont be signed unless we can agree upon a in house suspension for Chase that results in his not be rewarded for bad behavior (spending two days with mom, I think NOT) I fear things are going to just continue to get more difficult, the school always promises the moon and does not deliver in the long run. Anita... Jason's mom, it is a wonderful thing to hear Jason is babbling non stop!!! Like Steff said, Livvie talked really early and really clearly. Chase also did alot of the babbling and then one day simply stopped and we had no idea why. Looking back we now know it was due to his being unable to hear due to fluid that went undiagnosed until he was a year old. Any ole way, you just babble back and tell baby Jason we think he is one smart cookie!!!!! (okay, throw in a big fat hug from us too!!!) Hugs to everyone, have a great Sunday (while we sit here and admire our tupils, daffodils and hyacinths and forcythias covered in four inches of SNOW) 86 last week and 32 today, I sure hope Laurasnowbird is happy because we arent!!!!! :-D Robin :-) | ||
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| Name: | Christie | ||
| Child: | Christopher 12 | ||
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CC ~ | ||
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| Name: | Christie | ||
| Child: | Christopher, 12 | ||
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CHAT sometime soon, K, PLEASE.... CC ~ | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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~ JACKIE~ Good to hear from you. No wonder you don't post often! You've got your hands full!! Please tell Allysa HI from Emily. We hope to see you all this summer! ~ Have a great weekend everyone, Susan | ||
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| Name: | Cathy Email: | ||
| Child: | Katie, 4 | ||
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~ Katie had her IEP today and it was GREAT!!! OMG, we got everything we asked for and more,without one ounce of trouble! Someone pinch me (Jello--be nice) ~ Robin- Hugs and prayers kiddo.. we are with you! ~ Hi to all you newbies! ~ Jello - hugs to you and hey.. we had flurries today... so here ya go WOOOOOOOOOOOOOOOOOOOSSSSSSSSSSSHHHHHHH - maybe, Laura will intercept for you! ~ Hugs to you all - Cathy | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
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HAPPY BIRTHDAY PATRICK!!!!! I have a picture of you framed on my wall when you were 1 and in your stroller at the lake at the park. It is the CUTEST PIC and EVERYONE ALWAYS asks me about him. Give that boy a HUG and a HIGH 5 from Steff here. The beauty of Olivia is that she is so flexible on her b day and stuff like that. We have had a few probs where we couldn't do a regular birthday and she was just GREAT about it. We made it up later and BESIDES... EVERY time I make a cake I put candles on it we turn out the lights and we sing happy birthday and let her blow em out. :) SHE LOVES THAT!!!!! Regarding the speech I think you said your childs name is Jason. Oh please tell me I'm right. My girl Olivia was a VERY early babbler. We ENCOURAGED it by babbling right back at her. I started out by copying what she said in babble for a while then I would start something and she would repeat after me. I also would be in the car or for a walk with my kids and would describe EVERYTHING to her simply. I'd point out the park store grass flowers trucks etc. She took it all in... She happens to have excellent speech. Not sure if there is a connection between her babbling young and talking young and clear but she does. Also I think something that helps is to introduce different food textures at the age your therapist or ped says is appropriate. If we never hear from you again(hopefully we will), I wanna add that when we first started feeding Olivia solids and she was used to a few different foods we started to add crumbled up )very finely at first) graham crackers to her baby food. Graham crackers melt but add a different thicker texture to the baby food. I gradually started to crumble the grah cracker up less and less. By 1 Liv was eating her dinner with the family. Encourage healthy foods don't introduce chips please (or soda later on believe me you will thank me wish someone woulda told me) LOVE that baby and talk to him often and you will have a great life together... Tell us more about you!!!! I'd love to hear!!! steff | ||
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| Name: | Anita Email: | ||
| Child: | Jason 3 months old | ||
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| Name: | Jackie Email: | ||
| Child: | Justin 4 yrs | ||
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Robin hugs girl and can you believe we were up at U of M Wednesday LOL, Alyssa had her Pulmonary Check up which wasn't good at all grrrrrrr, we were there for 8:20 til 11:30 ran back home to drop my other nephew off at school and was back up there at 12:30 for Justin's 1:00 ST appointment, off course we didn't get out of there til 2:30 cause Justin has to run off and see Rhonda at the Admission desk for his snacks and whatever else they have for him back there and then he has to make his rounds to everyone back there. We're up there every Wednesday for 1:00 or sooner if I double book myself like I did for next week, echo, cardio checkup and ST uggggggggh LOL. Is it possible to maybe work into Chase's IEP for in school suspension and have him do it with an Aide, just a thought. Give him a hug for us we miss you guys. Hope everyone is doing well gotta scoot another appointment up at the hospital for a follow up hearing test and eval by ENT for possible sleep apnea again, we definitely need to find out why he is NOT SLEEPING!!!!!!!!!!! or when he does he is all over the place BAD!!!!!!!! we have noticed he is doing that shallow breathing thing again like the last time so hopefully it won't be anything too major. Ok Hugs and Prayers going out to all who are sick and not feeling too well. Oh by the way Miss Cathy so help me if I see one speck of a snowflake Sunday you are in a heap of trouble. So much for having Ashley's First Communion Celebration outside grrrrrrrrrrrr. | ||
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| Name: | Jessie Email: | ||
| Child: | Jason | ||
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I know the feeling about feeling like you are being punished more than the child! Jason got kicked off the bus for a day . . . so, he got to sleep in, I took him to McD's for breakfast and he got to ride with me to school . . . how is that punishment for him??? He had no clue he was in trouble at that point. He knew it the day before, but he doesn't understand consequences, so he had no clue that was his punishment. Anyway, I forget that you are in Michigan too. Have you ever contacted the advocacy group CAUSE (Citizens Alliance to Uphold Special Education)? I haven't contacted them yet, but we may do just that for Jason's next IEP. Anyway, there are offices in: Lansing, Detroit, Grand Rapids, Eastern U.P., and Western U.P. (can you believe that? - 2 locations in the U.P.!). Let me know if you want one of those numbers. Even if they can't help you directly, maybe they can point you in the right direction. Jessie | ||
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| Name: | Susan | ||
| Child: | Emily, age 13 | ||
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~ Robin.....I don't know what to say except that I'm really sorry! Surely they KNOW that they are teaching Chase a valuable lesson here. If you act bad enough, you get to stay home with Mom for a few days. Seems like most kids would ENJOY that! Can you address this stuff on his next IEP and see if they can try a new and improved behavior plan? One that involves them working out the problems and not causing you to miss work? Again.....SORRY!!! ~ Susan | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
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Oh yea you guys Liv has lost a lotta weight. Today her height was 48 inches(not bad for a 7 yr. old) and 80 pounds. She has gone from 95 pounds to 80 in less than 2 months. She is stating she is full. When people offer her things like candy or anything like that MOST times she will say no thank you I'm full. AMAZING. Her pants actually fell to her ankles at school a couple days ago when came to pick her up. She did her usual run to me (I love it cuz afterschool when I pick her up she STILL runs to me like she hasn't seen me in years and gives me a HUGE HUG) and her pants fell right to her ankles. THANKFULLY only 1 person saw and I had a long shirt on her so nothing peeked out. AND she is getting the hula hoop we were doing it a few minutes ago and she got it really well. Oh yea and yesterday her class had a sub. APPARENTLY a sucky one and the KIDS TOOK OVER!!! Her aide said they all had a really fun time even though it was chaotic and said it was NICE to see em for one day not ACT APPROPRIATE and be little stinker kids. Her teacher is the BEST but sometimes I feel like she blows small things that all kids do out of proportion. Ya know that need to make the kids almost TOO APPROPRIATE!!!! Does that make sense??? Well must go but talk to you all soon. (((HUGS))) Steff | ||
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| Name: | Robin/stressed/mom Email: | ||
| Child: | Chase/12.9/years | ||
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Laurie, thanks for the advice on the meds, you too Suzi. I myself LOVE Xanax, LOL and ambien and demerol. As a matter off act I think everyone could always have a wonderful life if they had a never ending supply of all three, LOL, okay fine, I am just KIDDING, it has been a HORRIBLE day so I was just wishing. The dr was with you Laurie, and said he is not wanting to try that kind of stuff unless it was a last result. Sooooo, he increased his Adderal to 10 mg three times a day and if he can tolerate that (he gets so mean and cranky as a side effect) then we will look into adding a little more trazodone maybe in the a.m. to help wiht the agression and leave his abilfy at 20mg as there has been no proof going higher then that helps. If this whole regimine doesnt help then we'll try a mood stabilizer in place of the abilify. Okay....so the horrible day today was because I got called at work this a.m. to come get Chase, he gets to spend two days at home with me, they kicked him out, and before anyone says they cant do that...oh yes they can. I have called everyone there is to call and it is legal, wrong perhaps but legal. #@*&%* !!! and I mean it! I still dont get the idea that making mom stay home with Chase and losing lots of pay is a good thing to punish CHASE with!!! I am soooo sooooo angry. What I need is a great michigan special education attorney, any one know one? I cant even imagine going into Chase's IEP this year wihtout one. okay, I'm sorry, all this complaining and the sun is shining. hugs to everyone, Robin | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
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OMG SUZI!!!!! HAPPY BIRTHDAY MERI!!!! She is the cutest..... I hope the krispy kremes and party at school was GREAT!!!! What'd she get? BECKY I thought about you on the night of the anniversary of ok city bombing. Make me soo sad seeing it again. Tugs at my heart for ya. Hope all is well and I saw on the bb how BIG Justin is getting. Jeff says HI too we were both talking about you that night. Melody... My girl Olivia is VERY social too but at your childs age what I would do is help to engage her with another child play with BOTH of them and basically SHOW her how to play by example... Now at 7 when we go to the park she will go up to a kid who's doing what she likes to do say HI ask their name and saay cmon wanna make a castle????? I think she just needed a little assistance in learning how to play with someone instead of NEXT TO someone. It took some time but she is doing sooo well in that aspect of her life. ROBIN..... how's Chase doing?????? I LOVE the big bro idea.You all gave me an idea here.... My neighbor and friend for 12 years works at LMU down the street. Liv's sp ed teacher went their for her Masters. WELL since its right down the street I thought I would ask her to ask around and see if there are any students of sp ed who would like to be like a gal pal a couple times a month with Liv. Specially soon with the highly stressful atmosphere we have here. Well the word is out. Jeff is getting his heart fixed. We saw his liver and heart surgeon yesterday. They decided to put in the piggy valve. His liver doc said gthey have a couple listed who take coumadin but they are high risk and none have any of the other medical probs like Jeff BUT he said he could still be relisted even with a mechanical valve. I LOVE his liver doc. Then the surgeon ...love those surgeons bedside manner-ahem... He's a brilliant cardiomyopathy doc but should still to people who are under anesthesia... basically said he will do the piggy.... jeff has dentist work that should take about a week and a half(you hafta have your teeth perfect before heart valve or any heart surgery) and he hasta have an angiogram, bloodwork, start his coumadin before surgery then he takes it for 3 months,hasta gives himself these belly shots too yuck they turn into giant bruises<think thats some kinda of blood thinner too . 10 days after all his dental work is done he will have his heart surgery. The surgeon gave him such a gloomy outlook very clinical very yeeech. By the way the liver doc said if he gets the mechanical valve now he may have to get a stent or shunt from his liver or something like that and that can raise ammonia to a level so high lactulose doesn't work and he's wqlk around confused etc. Jeffs already got high ammonia levels and is OFF veeeeeeery off and the thought of it getting to a point where he can't control it thru meds scared the life outta him and me too so PIGGY valve it is. :) OINK!!!!! Gotta go I am starting to nod off . Nighty night | ||
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| Name: | beamer Email: | ||
| Child: | Cassidy | ||
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| Name: | beamer Email: | ||
| Child: | Cassidy | ||
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| Name: | Melody Email: | ||
| Child: | Cole | ||
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I guess I was just wondering if anyone else has ever gone through this and how did you help your child to get more involved with other kids. Thanks for listening. Melody Cole 4 | ||
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| Name: | Adrienne | ||
| Child: | Russell and the girls | ||
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I know... I am deviating from what you wanted to use them for Robin. LOL... but like Laurie said, I would be leary of taking the Xanax on a daily basis. Does the Buspar make you tired Laurie? Xanax relaxes me but can make some people down right tired and go to sleep. Good luck Robin! A. | ||
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| Name: | laurie Email: | ||
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Have they tried BUSPAR (Buspirone) with Chase? It's the only true anti-anxiety med out there, one that is taken every day, etc but with the rest of his meds & history of what meds he can and can't take (which I can't recall), I dont know if it would be a good idea but just something to think about. Sorry I can't be more help...prayers, girl, for Chase and all of you - hope the new weaning goes well! hugs, laurie | ||
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| Name: | Valerie Email: | ||
| Child: | Nicholas (DS) 2, Derek 16 | ||
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| Name: | Susan | ||
| Child: | Emily, age 13 | ||
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~ Robin~ Did you just say Louisville TENN??? LOL It's pronounced "Lou Vull" and it's in KY! And I hope LOTS of Uno Masers will go there on or about July 8th! BTW Robin....I have a wonderful idea. You should just continue to READ everything at the Bulletin Board (DAILY please!) and then respond here on the MB! It will work out just fine! I hope all goes well at the docs for Chase. Let us know! Susan | ||
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| Name: | Robin Email: | ||
| Child: | Chase | ||
| Comment: |
Chase gets his special new bike May 6th and I cant wait to see his face!!!! Valerie...LOLOL to the musical Scooby Doo, if your 16 year old thinks Scooby is still cool enough to have in his room, then I guess Chase's Scooby belongs right where he is, back on his bed:-D I promise not to take him away until Chase is no longer interested in the guy, but I got to stand firm on the talking Barney ok? I cant take another year of the big purple guy, LOL!!!! Chase goes back to the dr for a re-eval on his meds tomorrow to U of M. He is not doing oh so great at school once again and there is way too much agression and behavior problems. Cross your fingers. Laurie, I think I need to pick your brain on medications again. I keep thinking.....have you ever heard of giving a anxiety med like ativan or zantax to maybe help with his anxiety/stress/anger? He is taking Abilify, adderal and trazodone. He is going off of the trazodone starting tomorrow with the weaning. I hope everyone is doing good, lots of you are all in my prayers. Hugs to all, Robin | ||
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| Name: | laurie Email: | ||
| Comment: |
-L. | ||
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| Name: | laurie Email: | ||
| Child: | MM & MJ | ||
| Comment: |
HUGS, laurie & MM (who says, believe me FOUR is FUN!!) | ||
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| Name: | Judi Email: | ||
| Child: | Sam & Patrick, Twins! | ||
| Comment: |
Thinking of you today. Hugs, Judi & Da boyz | ||
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| Name: | Suzi | ||
| Child: | Merideth 4 | ||
| Comment: |
I just can't believe she's this big ! We had her cake & icecream Sunday with family (and a deepfried turkey) Well, like any other 4, the Grandparents bought her a bike & rollerskates ! (She pitched a fit Fri when Sam decided to take the training wheels off his bike & she could no longer sneak on it) She's starting to "get it" with pedaling though she'll occasionally pull back & put the brakes on while you're trying to push her on it. Robin:We've gotten Meri hooked on some good oldtime R&R. Mostly from taking her to car cruises with Mike's Chevy. It's a riot when she walks up to the DJ table at one of the events & starts dancing to The Twist or Wild Thing. We keep the local classic rock on in the car. Well, gotta run. Need to pick up Krispy Kremes for her class ! | ||
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| Name: | Valerie Email: | ||
| Child: | Nicholas (DS) 2, Derek 16 | ||
| Comment: |
Along with his other Scooby stuff, Derek also had a stuffed Scooby that sang a Christmas song when you squeezed it's paw. When our house burned down last May, amazingly that was found unscathed in the rubble, and he still has it, and I don't ever intend on taking it away!! :) | ||
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| Name: | Robin Email: | ||
| Child: | Chase12 | ||
| Comment: |
Steff...HUGE prayers out for Jeffy! I knew his surgery was coming soon, just not sure when. I like the idea of donating toys to the hospital. We donate every thing of the boys, from shoes and clothes to toys to a program here ran by the ARC and CMH. It is for parents with developemental disabilities that have children and attend parenting classes so that they can try to keep their babies. Living on SSI gives them very little spending money so I think donations of every kind really help. Valerie...LOL to the Scooby Doo room. Chase still has a cool poster of scooby but the stuffed toy I took away was a talking scooby with a flashlight:-D He does still have his giant scooby pillow and a scooby blanket. Suzi I didnt know there was a sountrack to the 2 scooby movies, 1 and 2!!!! I will have to go check this out. He loves the sound track from Grease, songs #2 and #4 are his favorites and he sings them by heart at the top of his lungs, you got to see it some day, keeps you smiling!!! I have seen radio disney and tune disney in the stores but never bothered to look, I just assumed they were kid songs. Sons #1 and 2 always (and still do) love heavy metal and there is NO WAY I am going to let Chase near that music if i can help it!!!! :-D It's bad enough DH loves it :-D I saw the post about sexual feelings...eeekkkkk, when they told me Chase got "involved" wiht himself in the bathroom I about had a heart attack and thought they were off their rockers. Since then, I have had first hand knowledge that Chase is indeed finding "joy" where I perfer he not, LOLOLOL!!!!!!! So now, we just send him to his room and tell him that is the only place to do it as I never want another call telling me that the teacher caught him "enjoying" himself!!!! Why is it somone please tell me....... that our babes are delayed but not in the one area it certainly wouldnt hurt for them to be delayed in???????? YIKES! Okay, sweet Chase story even though lately he has been more monster man than sweet. Last year we lost one of our dogs when she climbed OVER the fence (learned it right from Chase Pat!) and got hit by a car and killed. From time to time Chase has mentioned her. Well today he came home wiht a big card he made for me. It had a picture of a dog on the front and it said Dear mom on the front also. I opened it and it said.... I miss Sophie, Love, Chase "bout broke my heart!!!!! And before you ask, NOOOOOOOOOOOO, we are not getting another dog until Bailey is gone. He is almost 11 and one dog is enough. Hope everyone has a great day, hugs, Robin | ||
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| Name: | Jessie Email: | ||
| Child: | Jason, 12 | ||
| Comment: |
I agree, what your son is going through is perfectly normal. We have been told by both doctors and Jason's teachers that we should not discourage it, but rather make him understand it's a private thing. Once in a while he will start up when he is around us watching tv and we tell him to go upstairs to his room - usually he will just stop. It's awkward, but at the same time it is perfectly natural and they just need to be taught where and when the appropriate place is to take care of themselves. | ||
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| Name: | Claire Email: | ||
| Child: | Adam | ||
| Comment: |
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| Name: | Pat Email: | ||
| Child: | Cory | ||
| Comment: |
He is going through his sexual awakenings and I have caught him many times under his covers experimenting. I told him it isn't nice and his dad has also had a talk with him but he won't stop. Any suggestions.. Thanks | ||
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| Name: | Heather Flanagan Email: | ||
| Child: | Nicholas | ||
| Comment: |
Thanks. | ||
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| Name: | Yvette S Email: | ||
| Child: | Nevaeh | ||
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| Name: | steff Email: | ||
| Child: | Olivia (7) | ||
| Comment: |
Robin I never knew they did blind tests. Thats interesting. I hafta redo my kids room. Their stuff is starting to surround em. And they have a BIG room. They have been gathering all the toys they no longer use. I told em they have to save 5 of their nicest toys that work and they can donate em to UCLA childrens hospital. The rest they are having a garage sale and they can keep the proceeds and buy something new. Livs gonna have a lemonade stand. hey you guys. Do your kids love to cook and bake> liv does soo much it's one of her favorite things to do. And btw her appetite is starting to wane. She's not eating near as much and is actually telling me she is FULL>Thats a first.:) Jeff is going to see his surgeon tuesday and he should be having his heart surgery between the 20th and 22nd. Its gonna be a tough one as he has soo much scar tissue as this is his 3rd valve transplant in 10 years.Schools insane and I have projects projects projects. My anatomy class is my easiest for me actually. I got a 98 on my midterm. Pretty cool eh? Only missed 2. Well gotta git but will talk soon BYE | ||
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| Name: | Suzi | ||
| Child: | Merideth | ||
| Comment: |
Give a holler if you need to know what other 6th grade boys are doing Suzi | ||
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| Name: | Valerie Email: | ||
| Child: | Nicholas (DS) 2 , Derek, 15 | ||
| Comment: |
Just read about you changing your son's room to be older. Just had to tell you, my oldest son, without DS is almost 16 and LOVES Scooby Doo! He has a scooby comforter, picture on the wall, pillowcase, and alarm clock. And probably other things that I'm forgetting! His room is also full of typical teenage junk, but I don't think he'll ever give up his Scooby!!!! LOL! | ||
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| Name: | Pat Email: | ||
| Child: | John-John, 5 1/2 | ||
| Comment: |
STEFF.. Will you please keep us up on Jeff. | ||
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| Name: | Robin Email: | ||