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Post by Claire on May 29, 2008 10:38:45 GMT -5
Welcome, we are from Cochrane, Ontario, Canada and have 4 children the youngest Adam was born with Down syndrome. This is the most wonderful site you will find for support and laughter too. I also had 2 stinkers that I love with all my heart. Adam and his sister (12) we're only 16 mths apart. Love your sense of humour.
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Post by Claire on May 28, 2008 21:30:01 GMT -5
You guys are making me laugh my head off here. ;D ;D ;D ;D I really needed that with everything that is going on. Thanks.
But with me I need a break from Barney. ;D ;D I actually catch myself singing Barney songs while I'm walking around the house. ;D
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Post by Claire on May 28, 2008 21:24:37 GMT -5
We are trying to figure out the positive of both home schooling and school. And yes CC Adam the youngest 10 then one is 17 with dual diagnoses, DS and Autism and is wheel chair bound does not communicate at all and tube fed, one is 15 and is Autistic and has a working dog, then they're are 2 not sure what age but older then Adam (I think around 14) both Autistic and twins with Triple X that are 21 and it is their last year of school. Then the rest are part time in the class with 1/2 integration in regular classes. So like I said it isn't easy for the teacher and EA's too, but that is not my problem. I worked in a nursing home before my stroke and even if my back ached I still put on a smile and took good care of my clients. You have to be professional. They have the degree not me. We figured that with all the different needs and difference in ages Adam is not getting 1/2 of the support he should be getting. I think that since they have made a completely different and versatile program for next year and that Adam will actually have little friends that have common needs like him, it is important too. I am really happy about this, Adam is 10 years old and has never had a friend with DS. Also for us the support of other families. So we will probably send Adam to school next September , and like Chris too said, if it doesn't work out we can keep him home after Christmas. It is the same here in Canada we can pull Adam out as we wish at any time. Today the principal was so tacky it was plain to see she was telling us exactly what we wanted to hear, so when she said " OK so should we set a date for the IPRC or do you still want to home school"?" I replied, we can set a date for the IPRC and her face got all smile (Their precious budget right?) then I added " Because whether or not Adam returns to school, or stays home next Fall the law says you have to prepare his goals for next year." ;D ;D ;D I haven't let the school know about any decisions and don't plan on it until the end June after the IPRC. I also said I wanted to see everything about these wonderful programs they are talking about before we make a decision. I'll just let them sweat a bit, after all, we have all had our share of sweating because of this wonderful system they call integration.
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Post by Claire on May 28, 2008 14:35:56 GMT -5
We had our meeting with the school this morning, so now a decision has to be made, and as usual some the things they said is making me wonder. First off we didn't let them know that home schooling was still not our first option. We we're ask if we could let them know before the end of June so they can approve the budget. Of course that is their main concern. Only one thing may make us change our mind and we need to really think about this one. Next fall they are having the kids over 13 that are in Adam's class travel to Iroquois Falls (30 minutes away) and taking in the kids from Smooth Rock Falls (30 minutes away also) That would mean that for the first time Adam would have 2 little boys his age in the class with Down syndrome also. They are adding one staff. So all together they will have 8 kids 3 EA's and one teacher. This year they have 9 kids from the age of 10( Adam) to 21, 3 EA's and one teacher. Adam being the only DS child in our community really has me wonder this time, I would love to have Adam have some friends with Down syndrome, not that anything is wrong with a typical child being his friend, but he is getting older and some of these friends will carry on soon and he may be left with maybe no-one around. Also having more parents that live what we live , fight with us for their rights may be good. I know one of the moms and her son Brady, and she has already called me and was disappointed that Adam may not be attending next Fall. She is a good advocate too for her little boy. We usually meet once a month when she comes shopping to our town and have the kids get together. Anyways got lots to think about this month.
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Post by Claire on May 28, 2008 14:15:55 GMT -5
Wish I had known about this site before he was born, would have been a pro by now. ;D I sure wish I would have been prepared to deal with the educational system. ;D. Wish I had known he would one day wear size 14 waist and 10 lenght. ;D Love this idea.
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Post by Claire on May 27, 2008 18:40:55 GMT -5
Glad to hear Ethan is going to Kindergarten. WTG Ethan. Abd thank you for the link, real cute transfers
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Post by Claire on May 26, 2008 22:45:45 GMT -5
Sure I will give you all the help I can.
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Post by Claire on May 26, 2008 9:22:20 GMT -5
Thank you so much for all your wonderful help and links. We are meeting with Adam's school tomorrow and I will post after our meeting. But the decision has been made for us. I have read and looked into it until my eyes can't see anymore And we will try the home schooling at least for a year and take it from there. We are not making this decision out of anger because of the pool incident, we are making this decision from a lot of things that have happened over the last 5 years with Adam in the Educational system, that has made not only us so frustrated but more important Adam also. We are form Canada, so the educational system may be different then some of you when it comes to rules and regualtions, but school is school, it is suppose to be about your child (any child DS or not) learning and progressing which is something Adam cannot do with this kind of attitude from the school. I already have 2 retired EA's who are willing to help one day a week each and willing to help prepare Adam's curriculum. One of the Teacher (Retired SERT) helping is retired from the school that Adam first started where the abuse took place, but she was not involved with the issues of abuse. She has already given me boxes of all kind of litterature and work that she prepared for her work at the school before she retired and is willing to walk me through what the next step is and explain to me how to teach Adam certain things. I find that I am getting quite lot of support with this. I have also called CTRC (which is the agency where Adam gets his OT and speech Pysioand music therapy at the school and the programs all continue at home if he is homeschooled until he turns 18, same amount of hours, nothing changes they just come to my house instead of the school. We also have a funding system here in Canada called SSAH (special, services at home) and they have granted me money to help pay for extra help for Adam's home schooling , like an EA for 1 or 2 days a week as I know I will probably need a break once in a while. Another thing we are going to discuss with the school tomorrow is maybe having Adam go to school a few hours a week but only for gym, music, art and so on as I think Adam needs to learn to like school again and have fun and be a kid. For the social aspect I have registered him for Bowling again next year, swimming lessons,not private but with other children, and some of the parents here that home school (only 5 families)( 18 children no children with special needs) but are willing to let us join their socializing group once a week. So things are looking up, and I honestly think we are making the right decision, if it works for Adam I will keep homeschooling, if not he can always return to school the next year if we think that he is less frustrated and is ready to go back to the school system. I will let you know tomorrow how things went.
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Post by Claire on May 22, 2008 22:53:21 GMT -5
I need some help with anyone that has done or know someone who has done home schooling with a child with Down syndrome. I have had it with the system, first school abuses him :'(and we are still in court with Human Rights with this one, and now this one doesn't abuse him but he is totally wasting his time. I refused to sign the IEP last week as all the goals we're related to him flopping and dropping. No mention of him reading at a grade 2 level or doing grammar at a grade 1 level and also being able to fully operate the computer by himself for typing and such. He even draws on Paint Pad. They are absolutely obcessed with this. They are so worried about the flop and drop issue he barely gets academics done, they actually took him to the pool in his bathing trunk but did not allow him to swim, just sat there with an EA and watched everyone having fun for the full hour. Even the lifeguard supervisor called me, she said it was so sad to see.One life gaurd offered to take him in and was told "Absolutely not" She called tog et my permission in writting so that next week she will be taking him in the water and not the EA or teacher. Their reason was that he flopped and dropped before leaving the school to go swimming. As if??? This is all I have heard from them all year, the flop and drop even thought the behavior team specialist have made suggestions like ignoring the issue. I have also copied and pasted all your previous advice given to me when I posted here last month. This is like taking a 3 year old to Dairy Queen with a bunch of friends and not allowing him to have any ice cream. Then they say he refused to take his trunks off. Am I surprise by this? ::)Maybe he thought he still had to go for a swim. Anyways both of us have had it. The way we look at it, (and I am not lying when I say this) we don't have the behavior at home, if he does flop and drop like most do of our kids seem to do, he is easily redirected. So next fall we are giving the home schooling a try before they frustrate him so much that he is unwilling to cooperate with anything. My husband and I discussed it and we have a meeting set up with the school next week. Any advice is appreciated. PS" Adam is the only child with DS in our community of 5000 population, the others are all over 18, , and we only have 2 English schools, so we are really on our own with this one, except for 2 wonderful retired EA's who are willing to help me out and teach me the ropes. Thank God for Angels.
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Post by Claire on May 5, 2008 13:31:53 GMT -5
We found out in my 5th month of pregancy that Adam would be born with Down syndrome. I went into premature labour. The doctors wanted to allow the miscarriage but I refused. I spent 3 months on bed rest, 500 miles away from home in a medical facility that would be able to help give Adam a chance at life if I delivered too prematurely. I don't regret our dicision at all, actually finding out before he was born got us ready by reading lots, asking questions and actaully my fist time on this site ;D To me it is the parents who don't know beofre the child is born that are so courageous. My neice had a daughter with DS 20 mths after Adam was born, she didn't know and said she wished she ahd, it would have prepared her. The only thing I didn;t like abut knowing is that I didn't really enjoy my pregancy, because of all the worrying that comes along with knowing.
My friend has also adopted a little boy at 18 mths with Down syndrome, and she chose to adopte this boy and not a typical child. Now I don;t know if I would be courageous enough to adopt but I am glad we decided to have Adam. The all love him dearly.
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Post by Claire on May 1, 2008 22:16:07 GMT -5
Adam has always loved throwings things, especially behind stuff too, like the wall unit and so on. He used to throw anyhting anytime got no reason. I personally think it started as a cause and effect thing.
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Post by Claire on Apr 30, 2008 21:51:36 GMT -5
First I want to thank you all for your wonderful advice. I copy and paste all of your suggestions and e-mail them to Adam's teacher. Everyone at the school is trying so hard. Connie: Adam had already picked a book and followed the routine well and got in line with the other children, he actually dropped for no apparent reason. They have also tried differetn people ask him to get up with no avail. Dawn: I hate to say this but I am so happy Adam is not the only Flop and Drop player. I was really starting to worry. Valerie: Don't get discouraged all our kids like any other kids do things different, just because Adam is doing it at 10 doesn't mean your child will also. I'll keep my fingers crossed for you just in case. ;D Also wanted to let you know that we did the ignoring at home and it does work. It took about a week to see results, but he barely does it at home anymore or in public. But sometimes in the educational system it is not possible to ignore. Like if they have 10 students waiting to go on a outdoor activity. So I understand their point of view also.
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Post by Claire on Apr 30, 2008 0:41:32 GMT -5
Great for you Noah
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Post by Claire on Apr 30, 2008 0:40:04 GMT -5
Just thought to add that the teachers and EA's have done the positive re-inforcement, the ignoring, the bribing and the redirecting. Some of the tgings worked for a while but he usually figures out the game and use it to his advantage. I also want to dd that when I went to the school, got him up the first time, and then for no reason at all he dropped again. I guess our little ones figure that puts them in power. Thanks and keep posting a few of us are looking for a miracle cure to this problem. PS: RE: the Behavior Crisis Team they don't have this agency at the school they are with an agency called Children's treatment centre. they come into the class and observe the child then give reccommendations, but when they are there it is usually only for a few hours if that, and of course it is always when Adam is having a good day.
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Post by Claire on Apr 29, 2008 15:21:39 GMT -5
I haven't posted for a while but have kept up with all the news once in a while. Adam now 10 has started a habit of dropping to the floor and just sitting there refusing to cooperate to anything. Talking nice, firm or bribing doesn't work either. We asked for a consult with the Crisis Behaviour Team and they came to his school. One of their suggestion was to ignore completely the behaviour which we we're able to do at home and the problem was solved after 4 days. He still drops once in a while but is easily re-directed to something else. Well, today I got a call from school that he was in the library, got in line when time to leave and then for no reason just dropped and refused to move. My husband and I went to the school, and sure enough, Adam was laying there and I could tell all had tried their best to get him to get up. Even the principal had tried and 2 other different people. He would not budge. When he saw me and Dave walk in he had the same stuborn attitude, I had to lift him up. I made him walk to the teachers, EA, and Librarian and appologize. As soon as he had appologized he dropped again. For no reason like it was the thing to do. I have never seen him so stubborn, when they told us he drops all the time, I was not thinking it was this bad. Did any of you have a child that would drop like Adam. I personally think it is a now an attention getter, as the teacher says he actually laughs sometimes and thinks it's a great game to be lifted up and dragged. He also now weighes 90 pds. Not counting the fact that he is happy to be coming home when we are called to get him. I hate to admit this but his therapist told us it was "typical" a lot of DS children do it as either frustration, stubborness or simply getting a reaction. Well Adam is getting a reaction all right he has them over him all the time. He does not have a personal EA but to tell you the truth I think some days he actually has 3 just to keep up with him which leaves the other kids without an aid. He is in a special needs class with 7 other children. I need a solution or some advice and I told his teacher I would post cause you guys are all pros'
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