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Post by Claire on Oct 28, 2009 10:31:12 GMT -5
That is so well said, I never even thought of it that way. I agree with you 100%. We still buy the new Barney DVD whenever it comes out, actually I just got him one for his Birthday on Saturday. How silly are we? Oh well learn a new thing everyday, thanks.
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Post by Claire on Oct 28, 2009 8:08:01 GMT -5
Awww he looks so boyish.
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Post by Claire on Oct 26, 2009 22:54:15 GMT -5
I also love this site, it has been my only way of staying sane sometimes in the last 12 years. All of us understand with no prejudice how another parent may feel and do not judge for it. I have had many of those moments actually especially lately as Adam sister 16 mth older (13 going on 20) is starting to develop, go to movies and little dances with friends, and I can't help but think how it would be for Adam, or if his sister would actually let him tag ;D along if he hadn't been born with Down syndrome. But then sometimes I think they have a better relationship then most kids in her class that have siblings with no disabilities. Adam may not go to dances, movies and parties, but they sure goof off good at Barney songs together. PS: Has anyone found a way to get rid of Barney forever yet? ?
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Post by Claire on Oct 26, 2009 22:45:07 GMT -5
Yes to all of the above CC I have went into the school, spent a few hours for a few days and showed them what we do. but like I said he isn;t too bad if one of us is there, which proves my point, like you said "How far can I take this?" No the grade 3 are not mixed with the grade 8th, completely different school yard, I don;t think he can even hear the grade 6 to 8 from where they are. They do go at the same time. Adam si mostly with the grade 3. And yes we have thought of Homeschooling definitely and are still considering. The only thing that worries us is that being in such a small town it is hard to get him interacted with other kids that are not at school. Only 4 families I know do homeschooling and their kids are not special needs.
Behavior Therapist has been called upon, we are just waiting for them to find the time to come to the school. Thanks for your input.
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Post by Claire on Oct 25, 2009 18:09:59 GMT -5
Yes Chris too The Human Rights Commission has changed their mandates as June 2008. They no longer handle investigations. They are more on the pro-active awareness. It's all bull. After 4 years of investigations and telling us they had enough evidence to go to Tribunal they just drop us like nothing. We should have went Media in the first place when it happened and when he was still in that school. We are trying to get it to the media now but it's old news to most so getting someone to take the story may be hard. We haven;t given up yet though, we didn't go through 4 years of hell to drop it now, not counting that the teacher who allowed the abuse to happen is now Special Needs Resource Teacher in that same school. The teacher who threw him against a wall in the gym has only been transferred to another school in a town 1 hour away. I don;t think Adam even remembers what has happened to him, but it is me that can't let it go. They treated him like an animal and that you don't do to any of my children especially one that can't come home and communicate his distress. As for a change of school, we live in a small community where their are only 2 English schools. The first one abused him and in the one he presently attends he is in a Special Needs class most of the day. he goes to the grade 3 class to do his Grammar and Reading math with grade 1 and recess with grade 3 to 8. He has always loved reading or being read to. ;D Last spring he won second place for the District Spelling Bee for grade 1 and 2. ;D ;D ;D He made a mistake on the word "mischievous" Although all the Spelling Bees are verbal and not written he was against typical kids, he was the only Down syndrome child there. There was 27 kids. Everyone in the room had tears in their eyes, including us. ;D Jackie, I actually agree that he is at a cognitive level of 3. He does all the stuff a 3 year old would, like responses and communicating, the way he thinks,plays, interact and so on. The only reason he can read and write so well is because he loves these things, (I think that is the key to our kids learning, they have to want to do it and love it) and because we worked hard on teaching him from the time he was born,, whether it be just reading to him or having full images of letters and words all over our house for 6 years. You should have seen my dining room and living room looked like a kindergarten class. We still watch the Barney Movie with him. I know all the Barney songs by heart and even find myself singing them while doing housework. ;D ;D ;D ;D Can Barney ever die??? He had a psychometric assessment done last year in Ottawa where we see most of our specialist (500 miles away) and that is what they said too. Who knows maybe he's a Savant. Just kidding. I also agree with you that the behavior is do to, partly some kind of frustration but also power battles and maybe showing some independence. frustrations has been proven in the past with all his behaviors to be a huge part of the behaviors. Finding the problem is not as easy. I will also send this link for behavior to his teacher also. She is always welcoming the help. This is the first time in our small town that they actually have a child with Down syndrome at school at the elementary level. So basically I have to teach them. But what do we do when they don't listen to our suggestions? Our meeting has been scheduled for nest Friday and we have requested the Special Needs Rep from the school board and all staff working with Adam to attend and also his case workers. For now all but 2 cannot make it to the meeting, one is out of town and the other is attending another meeting at the time but will be there via teleconference if we need her. I will let you know what comes out of this. At least I feel good that all are willing to meet and try to figure it all out. ;D
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Post by Claire on Oct 24, 2009 12:35:02 GMT -5
Hello Michelle, nice to ahve you back. We are parents to 4 children, live in Northern Ontario, Canada in a small community where Adam is the only child with Down syndrome so this site is my Haven. ;D
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Post by Claire on Oct 24, 2009 12:12:17 GMT -5
Sorry I got cut off the internet yesterday trying to post my message. Just wondering if any our your kids have obsessive behaviors and when they get rid of it they replace it with another one. Adam started around 5 years o age. It started with slapping peoples faces. (Not a good one) The behavior team that came into the school said to ignore the behavior that it was done for attention. and to just remove him or yourself from the situation. Well it got from bad to worst until his sister only 16 mths older got enough of it and slapped him back. He has never slapped anyone since that day, because now he knew it hurt. I had mentioned to the behavior team that even if Adam was DS there we're some things that we just can't ignore. To this day they are still saying it wasn't right for his sister to slap him. Hello...... after getting slapped in the face 3 times in a row, he's lucky that's all he got. The slapping soon got replaced by burping, (and I mean some mean belches that I didn't know could come out of that little mouth) Again same decision from the behavior teams and school. then he added passing gas on demand. I actually had him checked medically to see if he had some kind of Celiac or something as I couldn't believe that someone could pass gas so many times in sequence without pooping their pants. That one was replaced by now swearing. Another student at school was caught teaching him, and telling Adam to say it louder. Then when Adam would be caught the kid would run away. This other child is also Special Needs. So the school separated them as much as possible. But too late, Adam now had attention form saying these words. All the F words he can say very clearly even though Speech Therapist say eh cannot do the sound F. Again the school Motto is to ignore. I told them that it was not an obsession but an attention getter and a power battle. I want to add that we don't swear at home. and that this swearing has been going on for 5 weeks at school. We kept getting called in to go and pick him up almost daily. And he started swearing at home. He was not mad or anything just walking around with verbal diarrhea swearing all the time. Like if the cat came downstairs he would say " F... cat" So we decided to take him out of school for a week and use tough love. It wasn't easy. We decided to give him some good words to use instead like Holly Molly Macaroni and so on....The first morning he went in time-out 11 times in 3 hours. Not counting the hardship of sometimes having to take him to time out. We know he understands fully because he would sit in his time out and very softly say a bad word then say a good one out loud for us to hear. Now after a week I have to say that he barely swears at home, I may have heard one or 2 this week and when we do we say " What was that Adam?" to which he replies " Holly Molly Macaroni" The problem is still full force at school so they have been calling us every day this week sometimes twice a day to go and get him. The last time they called on Wednesday I told them that we we're not taking him home anymore from school until a meeting was arranged and some kind of program in place for him for what they consider to be an an obsession. We do go to the school when called and he stops swearing while we are there, so that proves that it's their problem now. We have done everything to cooperate with the school.They have to show him who is boss. I told them they don't give him enough credit to how much he understands. I also told them that Adam had to learn social skills like being polite and not swearing like any other person. They say Adam is cognitively about 3 years old but he can read and write at a grade 3 levels, so I would take that foul language from any 3 year old, so why take it from Adam. I don't think these are obsessions but either attention getter or power battles like any 12 year old would have. If any of you have had the same or similar problems please post and I will take some of your ideas to the school for our meeting. Sorry for the length just tried to put as many details as I could. I will appreciate any ideas on the subject. PS: For those of you who know us and know about the abuse given to Adam at his first school, Human Right's Commission has dropped our case so we need to take it to Tribunal ourselves.
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Post by Claire on Oct 21, 2009 10:21:49 GMT -5
Adam now 12 had his T-A after sleep apnea test at the age of 2. It took a while also for it to make a difference. He did fine for years now since he turned 10 he wakes at every hour of the night and plays or self talk. Doesn't get much sleep. His last apnea test last year came back good, so I think our kids just don;t need as much sleep as I have talked to many parents of children with DS and most say their kids don;t sleep much either. Hope this helps.
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Post by Claire on Feb 24, 2009 17:45:55 GMT -5
Glad to hear you are all doing well
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Post by Claire on Feb 24, 2009 17:41:16 GMT -5
That is so cool
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Post by Claire on Feb 22, 2009 12:16:32 GMT -5
If you go on Facebook I have started a group Boycot Facebook for 2 weeks to get some attention, please join.
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Post by Claire on Feb 22, 2009 11:35:57 GMT -5
I am definitely deleting all pictures I have on Facebook, and may even unregistered.
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Post by Claire on Feb 22, 2009 8:51:16 GMT -5
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Post by Claire on Feb 22, 2009 8:43:49 GMT -5
Prayers and hugs from Canada, hope all goes well with the surgery.
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Post by Claire on Jan 22, 2009 10:00:56 GMT -5
Adam does a lot of self talk but mostly after being caught in the act for something he is not suppose to do. If he gets reprimanded or punished like for hitting lets say, he will go to his room and we can hear him say " Adam no hitting, No Adam not nice" and so on so we know he understands, little bugger. . He also self talks when he is playing alone in his room.
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