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Post by MaggiesMom on May 16, 2004 1:25:12 GMT -5
Congratulations! Tell us all about what's been going on. I hope you're not as sick as I was! It's the pits.
Take care...Atomic Fire balls after you eat...believe it or not! It worked like a charm for me and my nausea.
Robin M - maggie's mom
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Post by MaggiesMom on May 16, 2004 1:30:13 GMT -5
I don't like the part about making it harder for parents to take the schools to court. It's hard enough already when they have lawyers kept around for just such an occasion. But we have to pay for our own.
The whole thing makes me nuts. Don't get me started!
Robin M
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Post by MaggiesMom on May 16, 2004 1:15:07 GMT -5
Oh the stories I could tell...Let me just say that to start things off, I go to the OB/GYN to discuss with him whether I should get pregnant or not, based on my age, health, etc. He said "Oh sure, you're chances of having a child with DS are the same as anyone else's."
Well needless to say, I proved that point correct!
I was GREEN for 6 months while I was pregnant with Maggie. I was not sick for more than a few weeks with Matthew.
I cried all the time. I knew something was not "right". I even had regrets of being pregnant soon after I found out. Don't ask me why, I just did. I wasn't scared of anything in particular. I just went from really wanting another child to questioning why I had made the choice to try again.
When Maggie was born, no one said a word in the OR. It was too quiet! I asked what was going on and they wouldn't say. I sent my husband over to see what was going on and he came back over with the nurse who then said..."your baby is having difficulty breathing, we think she has DS, she has to go to the NICU."
I thought "okay, I can deal with that" and never really blinked an eye. Tim was totally caught off guard and really devastated. But, deep down, I think I had always known that she had DS. I don't know why, I just knew.
I adopted a saying after Maggie was born and I began to be better "in tune" with that little voice in my head...
"When that little voice inside your head talks...listen!"
I wish I would take my own advice sometimes! I'd be more in tune with what's going on.
We're still praying for you and thinking about you Janis! Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on May 16, 2004 1:22:17 GMT -5
When we did a pinata for Matthew's birthday, I snuck in and cut slits all through the under side and edges to "weaken" the frame. It worked!
The first time we did one, we had all the kids take a turn, then went and got a metal bat and let an adult beat it to death! We had powdered candy by the time it was over with. LOL
Good luck!
Robin M
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Post by MaggiesMom on May 11, 2004 0:19:31 GMT -5
I voiced my opinion recently that I felt like I was the only one who had ever written my congress person etc. I'm sure others may, but I have never once had another parent of a child with DS tell me they have written anyone...until I posted that on this website.
It helps me to know that others do write and tell the "big people" in the world that our kids matter. Sometimes I feel like I'm fighting the world...school, insurance company, therapists, government, etc. I'd love to know how others have faired. What, if anything was accomplished. How I can change IDEA so that it helps my child succeed in school? The list goes on.
Sure, it's not for everyone. Nothing ever is. But, to those who are trying to "fight city hall", it seems to go better when as Linus says... "a group of parents get together..."!! That was my point, if we all get together, I feel like our voices will be heard.
Even if I'm screaming by myself, it's nice to know that someone screamed that same scream before me.
Never meant to cause any friction. Always out for more information.
Thanks for your opinions. I value them all.
Robin M - Maggie's mom
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Post by MaggiesMom on Apr 15, 2004 18:54:55 GMT -5
Janis,
Our hearts are aching with yours. Please know that we are praying for you and your family. God bless you.
Robin M - Maggie's mom
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Post by MaggiesMom on Feb 25, 2004 1:10:54 GMT -5
Thanks girls! I still feel beat, but it's better today than yesterday.
We start the parade of 5 therapies a week this Thrusday. We went from having 1 or 2 a week to 5 so this should be interesting. I'm not convinced that more is better.
Take care.
Robin M - maggie's mom
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Post by MaggiesMom on Feb 24, 2004 1:36:51 GMT -5
How many ways can you spell Ugh?!!
I felt so beat up when I left that meeting today. After I left, I cried for an hour. Just too much time and effort put into something to feel like no one hears what I'm saying.
I think we have good OT, PT and early childhood services in place. The feeding and speech they offered continue to be with the SLP that has no experience in what we need. The good news is she's the most qualified in the county. The bad news is she's not adequately trained at all. She is by state and county standards, just not by those who certify AV therapists.
They wouldn't put her hearing therapy in her IEP. They just call it speech services. I did get them to pay for 6 sessions with the therapist she has now, but they say that's it.
I don't think I have the energy to keep fighting them. At this point, I've spent $400 talking to a lawyer and we can't afford to keep doing that. Going to court is the only way to challenge the state regulations.
I guess it's either live with it, or move to NC, OH, or one of the many other states that do recognize this therapy as necessary.
It's frustrating.
Thanks for listening and for all your ideas and suggestions.
Robin M - Maggie's mom
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Post by MaggiesMom on Feb 23, 2004 1:53:38 GMT -5
Thanks Michelle!
I have quoted so much "legal stuff" already, I'm blue in the face from lack of air!
But, I'm taking my stack of legal docs back tomorrow and we'll see where that gets me.
I have not requested "stay put" as we agree on most of the therapies. It's just this one we can't seem to get past. I'm going to approve the ones we do agree on tomorrow. And they wrote me yesterday to say they are going to provide 5 sessions of the 6 we agreed on. We we'll see if I can get that last one out of them.
Keep praying for us! I'm having to go it alone as my mom is sick and can't keep the kids, so Tim has to stay home with them. I'm nervous about that!
Take care. Robin M - Maggie's mom
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Post by MaggiesMom on Feb 20, 2004 23:48:02 GMT -5
The interesting thing is...the school offered to have Maggie's preassessment and post assessment done by her current AV therapist. (That's her hearing therapy) The school's therapist had never even met Maggie until I invited her to observe an AV therapy session. The school's SLP has not assessed Maggie. But she said she was going to write the goals and objectives based off of what she observed at the session.
Those assessments were to be part of a "package" they offered as part of "transitional" services to get Maggie out of her current therapy and into their regular Speech therapy program. Which is totally not appropriate.
I keep being told that it's common professional courtesy for outgoing therapist to pass on "exit" information to incoming therapist. Thus the new therapist just reword the former goals and objectives and use them as their own.
I asked our AV therapist not to do that so I could prove that the SLP knows nothing about this type of therapy. But, now the school wants to pay our AV therapist to use her goals and objectives for Maggie. I feel like it's a catch 22...if Maggie continues to see the AV therapist as well as the SLP, I'll have no way of proving that any progress Maggie makes is not due to her seeing the SLP.
The lawyer said to not let Maggie go to her hearing therapy for 6 months, then we'd have a case. I understand that, but since my daughter is already 1 to 2 years behind in language skills, I don't want to add another 6 months to that! Unacceptable.
They have me on that one and I know it. But I don't feel like it would be responsible to my daughter to let her "fail". I know that's how the school system often functions...don't fix it unless it's broke...but I don't want to wait that long. She's already delayed or she wouldn't qualify for the program.
It just gets down right rediculous at times. I often feel that if I could take all the time I spend fighting the school and work with Maggie, she wouldn't need therapy! But then again, I don't know the theory like they do.
I don't think getting an outside assessment done is going to help since the school is actually agreeing to it. It may be that at some point I'll have to get an assessment completely apart from our therapist and the school. But if the school can't be held to it...what good is it? Would it help my point in due process?
The bottom line is that until someone changes the regulations for the state, I don't think things are going to change. They are going to stand on those regs. They've quoted them to be so often, I can say them in my sleep.
Thanks for the suggestions!
Robin M - Maggie's mom
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Post by MaggiesMom on Feb 19, 2004 22:53:37 GMT -5
CC and others...
No, Maggie doesn't have to have these tests done. They asked me if I wanted them done to help see what services she needs.
What brought this on is this...Almost exactly one year ago, I went to visit the preschool where Maggie would be enrolled. I asked about hearing impaired services, they said "we don't do that". LOL
Since then, I've been through lots of meeting, one botched IEP which I refused, mediation, and working on the second IEP just to get her started. Maggie has to do homebound therapies and the preschool teacher will come here since she hasn't had her heart surgery yet. That won't be till she's 4 or 5. Till then, she has an awful time just getting colds, so we dont want to risk pnuemonia.
The school and I agree on PT, OT and the preschool teacher. But they still don't want to provide the hearing therapy she has received since she was born through Early Intervention. And they're right...the state DOE doesn't require it. But, I think it's appropriate and obviously Early Intervention did too, or we wouldn't have had it.
The school assessed Maggie last spring for the eligibility meeting. That was fine. Well, as fine as it can be. You know how wonderful it makes you feel when your child can't do anything they ask them to do! In a new room, with new toys everywhere, and a new person asking questions with pictures from the 1950's!
Then in August, the PT and OT assessed her for the IEP meeting. I had to set up the assessment then as the school wasn't going to get it done in time. But I did it.
Now, they've known since August when I refused the first IEP and opted to stay with EI until Maggie was 3, that we were going to have to do an IEP in February right? You'd think they would have new goals and new assessments in place right? NOOOOOO! I had to call, ask for new goals and new assessments. Once again, I had to schedule the appointments because the school never did it. And now, the IEP has been cancelled several times due to snow.
During all this, the teacher and therapists keep saying, "Oh, we don't need to reassess Maggie, we'll just amend the IEP as we go along." Well am I wrong to think that that's backwards as to how they are supposed to do it?
That's when they offered the psychological tests. They said it would be a better gage than the Brigansk (sp?) that the preschool teacher uses since the B is language based.
They have no clue how to deal with a deaf child, there is no teacher for the hearing impaired in our county. They get away with this because there is a regional program. Yet, the regional program does not have the type of therapy Maggie needs either.
Sorry I got on my soap box! Maybe this helps you understand why I asked this question. I'm about as confused as they come with all this school stuff.
I have researched, I have my IDEA notes and I've paid my $400 to the lawyer seeking legal info. But we'll see how far it gets me come Monday. That's our new IEP date. Two weeks after my daughter turned 3 and has gone without services!
I personally, don't care for standardized tests. I am a test administrator and I know what they ask of the older kids. It's down right goofy at times. But, I want to do what is going to help Maggie the most so I'm trying to keep an open mind.
I knew asking you all would help get a well rounded point of view.
Thanks!
Robin M - Maggie's mom
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Post by MaggiesMom on Feb 14, 2004 20:45:31 GMT -5
The letter I received listed two tests:
The Mullen Scales of Early Learning. It says that it is used to assess Gross Motor, Visual Preception, Fine Motor, Expressive Language, and Receptive Language.
The Leiter International-Revised (Leiter-R) is listed as a measure of Cognitive development and Memory.
The SPED Director said that these tests would tell us what therapies etc. are appropriate.
I'm all ears if you all have any further information.
Thanks!
Robin M - Maggie's Mom
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Post by MaggiesMom on Feb 14, 2004 0:37:56 GMT -5
Hello all.
We're still trying to get an IEP with the school. We got snowed out this week, so they say "maybe, we can try again in two weeks!" Don't you love schools?!
The one thing they are pushing now is for Maggie to have a psychological test done. They say that it's more appropraite for her since she is hearing impaired as well as having DS.
I can tell you that that goofy Brigansk (sp?) test was not appropriate. It was language based and had very poor pictures that had to be from the 50's.
Can anyone tell me why I would want to have one done? What benefit it would be to Maggie? And/or if they have had negative experiences with them.
Thanks!
Robin M - Maggie's mom
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Post by MaggiesMom on Mar 23, 2005 0:07:03 GMT -5
Hello all! It's been a long time and I have lots of excuses, but you all live the same busy life I do, so they don't count huh? I wanted to drop in and say hello. Maggie is growing and getting way too big. She turned 4 on Valentine's Day and is aging her mother very quickly! Let me give you an example of just what I mean...last week, Maggie was watching Barney, Daddy was fixing the toilet upstairs and Brother was out with a friend. Mommy decides she needs to go potty for all of hmmmm, 60 seconds, and when I come out, guess who is chewing on a AAA battery? You guessed it! Now let me remind you that this is the child that refuses to put any "whole" foods in her mouth. She has to have everything mashed or baby food added to swallow it down. No chewing, biting, etc. So I take the battery away and go into her play room to see where she found it. I'm guessing that she had gotten her Daddy's remote control, dropped it and the back had popped off. I found the remote and had one battery in my hand, but I couldn't find the other one. To make a long, long story shorter...we tore the house upside down looking for the battery and never found it. She only had 60 seconds to stash it, so we new it couldn't have gone far. I called the doctor and poison control to ask "what if" questions. They told us to give her milk and take her in to the doc in the morning if the battery didn't show up. No battery, so we go to the doc, to get x-rays and there it was! IN HER STOMACH!!! Ugh! We then get sent to a GI specialtist in another town, wait in their ER, get more x-rays, and wait! GI doc decides he can remove it by scoping her through her mouth and pulling it out. They put her to sleep, in goes the scope, down goes the battery. Too low to get it. So they then decide to flush her system all night and I mean FLUSH to see if she can get rid of it on her own, or at least move it on down. 100 nasty diapers, bed sheets, gowns, socks etc. etc. later, no battery. More x-rays, the GI doc decides it's low enough now he can reach it from the bottom end. Ouch! Back to sleep she goes and he gets it!!! Yippee! He had the surgeon on stand by just in case he didn't. Thankfully, it all came out in the end. (Sorry, had to say it!) Maggie's new nickname is "Bunny" and she's no worse for wear. She's already working on her next trick. Whatever that may be. Hey Robin...the other one...did Chase lose any of his escpaing genes? Maggie seems to have found some! We've found her twice in the middle of the road. Ack! Needless to say, doors are locked, batteries are 6 feet off the floor. So you can see, we've had an interesting time here lately. I've finished my classes to get my teacher's license renewed. Yeah! I'm tutoring 7 students in the evenings right now and I'm working at Weight watcher's as a receptionist. Still homeschooling and scrapbooking. I'm too busy to remember what day it is! I lost 30 pounds since last July and am loving working for WW. I enjoy getting out of the house too. I better run. You all take care and give those kids a hug! I wish I had more time to chat. But, life keeps getting in the way. Robin M - Maggie's mom
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Post by MaggiesMom on Mar 1, 2005 0:08:44 GMT -5
Hey! I've been MIA for a long time, but this caught my eye. Maggie has had a constipation problem from day #1. I swear my pear juice. She drinks the 100% natural pear juice or Gerber's 100% pear juice. She also eats pear "sauce" which we buy in stage 3 baby foods as needed. She eats oatmeal every morning, drinks juice three times a day...a little diluted, and has a BM at least twice a day. We did the whole Miralax, laxative thing and none of worked well for us. Our doctor also told us NO bananas, apple juice, rice, cheese, etc. cause it makes one get stopped up! We've followed all that and it does work for Maggie. If I even give her yogurt that has bananas in it, she gets consitpated! Go figure. Play with her diet and see if that helps. That's my 2 cents worth. Hope something helps. I'm sure at this point, she's so freaked out by the whole experience, she doesn't want to even think about pooping! Take care. Robin M - maggie's mom
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