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Post by Chris on Oct 9, 2011 19:56:36 GMT -5
Take anything to help keep their minds off the surgery. Snacks, pillows, blankets, nice footies to keep their feet warm. We lived within a 30 minute drive to the hospital when Sarah had surgery. It is very stressful. Maybe a collection of stories about heart surgery with happy endings. How about some supplements to keep mom and dad healthy? I got strep throat a couple of days after Sarah had her surgery. I am convinced my immune system was weak due to the stress. I don't know if your cousin has other children but I appreciated it when other people would help make my other daughter feel special. It was an extremely stressful time for her. Just being there will be so helpful to your cousin. Just let her cry. I am getting teary eyed just thinking about the feeling of handing Sarah over to the doctor right before her surgery and not knowing if I would get to hold her again. That was by far the worse part. Just thought of one more thing. I know I was pumping breastmilk and anything to make that easier would be wonderful! Chris
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ADHD
Sept 9, 2011 19:16:08 GMT -5
Post by Chris on Sept 9, 2011 19:16:08 GMT -5
Boy, that is tough, Jackie! It sounds like mom and dad are in denial. Your grandson can't be happy at school if he is constantly in trouble. I would just take the approach that ADHD does run in the family and although your grandson may not have ADHD you think it would be helpful to have him tested. You just want to rule out ADHD. I have a daughter with ADHD and her self-esteem was really suffering because of the problems she was having in school. She was a good girl but had the attention span of a gnat plus she was in constant motion. I chose to use medication and we saw an immediate improvement. It is what she needed to even the playing field. Just think how smart your grandson could be with support and/or meds!
Chris
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Post by Chris on Sept 1, 2011 4:18:48 GMT -5
Yikes! Sarah will be 10 in a week and a half and I am dreading periods. I just noticed that she is beginning to develop breast buds. I suppose there is nothing we can do about it. I am happy to hear Lauren is handling it all so well. Chris
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Post by Chris on Jul 29, 2011 21:52:07 GMT -5
We had vacation bible school tonight and Sarah scratched the back of one boy's neck. The kids were all lined up in three close rows. Maybe it is a personal space issue. One of the ladies at our church has a child with autism who is the same age as Sarah. She said it seemed like Sarah was aggressive when another child got in her personal space. She also suggested it might be a sensory seeking problem. It absolutely is impulsive.
I really don't think we are egging her on since it happens the most at school when we are not there. When she sees the other child is injured she is full of remorse. She will say sorry over and over again and have tears in her eyes. I don't think she gets wicked pleasure watching children in pain but I think she finds a sudden yelp or sudden movement interesting. I totally believe this is a part of her disability. I don't think she can totally control this impulsive behavior.
Chris
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Post by Chris on Jul 28, 2011 15:38:31 GMT -5
A., the weird thing is she doesn't seem agitated or upset most of the time she attacks someone. She does get extremely defensive when she is upset or doesn't want to do something. I almost forgot about the spitting. She doesn't spit as much as she was a few months ago. I guess I should be thankful about that. I think she spits for the joy of spitting and she also loves the reaction when she spits on someone. She thinks it is funny. I wouldn't rule out some possible sensory issues. We don't start school until after Labor Day and aren't getting any services in the summer. We will see! Thanks again for your input. I love the advice I get from the been there, done that parents. Chris
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Post by Chris on Jul 28, 2011 9:50:12 GMT -5
A., Intuniv is a nonstimulant. We just started it and it has to build up in her system before we can determine if it will be effective.
I don't think it has anything to do with personal space. A few months ago I went to pick her up from school. I got there just in time to see her go up to a boy in the hall and smack him on top of his head from behind. She just walked out of her classroom and gave him a good walop. He didn't even know she was there. I think she enjoys the reaction and for some reason nobody ever fights back. She has scraped the skin off of their arms and left bite marks so it is serious.
Her speech is extremely delayed although she communicates fairly well. Between her speech and signing we can usually understand what she is saying.
Chris
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Post by Chris on Jul 27, 2011 22:50:18 GMT -5
Sarah will turn 10 in September. For the past year, we have been struggling with her impulsive and aggressive behavior. She will scratch, hit, kick, push or bite other children without being provoked. Most of the time it is out of the blue. She has also started to destroy property. We have had a functional behavioral assessment done. Basically it told us that she was unpredictable. She also become enraged at times. She can be the most lovable charming child but now we have this other side of her personality. We take her to a physiatrist who is also a behavioral specialist. We tried Ritalin for the impulsivity but it made Sarah more irritable. Now we are trying Intuniv. She just started taking it today and the doc said it could take up to two weeks for us to notice any difference. Tonight we were at Vacation Bible School and she suddenly attacked another child. She scratched her, bruised her arm and punched her in the stomach. This girl is at least a head taller than Sarah and did nothing to provoke Sarah. She was just standing and singing the songs! I am at a loss of what to do. I really don't want to confine her to our house forever. I really would like her to be able to play with other kids. Sarah is totally non-compliant. I am so tired. Chris
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Post by Chris on Jul 21, 2011 7:39:50 GMT -5
Speech is one of those funny things. Sarah's speech is often garbled and difficult to understand but on those rare occasions, it can be as clear as a bell. I have heard great improvements this past year. It just happens to be an area where she struggles.
We ran into a friend with a daughter who has Ds and is about 9 months older than Sarah. We hadn't seen them in a couple of years. This little girl is one of those kids who doesn't struggle with speech. What a difference!
Thanks for sharing your sweet story. Way to go Kaelyn! ;D
Chris
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Post by Chris on Jul 16, 2011 21:36:56 GMT -5
Welcome to Uno Mas! My advice is to love your baby. Mine was such an easy and content baby. I have a 5 week old granddaughter who is a big crybaby. Sarah never cried for the first three months. It was great! The first year can be overwhelming because of all the potential health problems. I know we had doctor appointments all the time. Just don't forget she is a baby first. The Down syndrome is secondary. Congratulations on your new daughter. She will bring you so much joy! Chris
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Post by Chris on Jul 16, 2011 21:32:34 GMT -5
Pat, to tell you the truth, Sarah doesn't have very many privileges. Right now we keep praising her and telling her she is such a big girl. She seems pretty happy with that although she does ask for a toy every few days. We have never taken her to a movie so I think we will do that next week. We'll make a huge deal about it and tell her big girl's get to go to movies. Hope she loves it!
Chris
PS........still accident free!!! ;D
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Post by Chris on Jul 13, 2011 14:20:50 GMT -5
My ex-sister-in-law was Brazilian. They keep the child in one room, usually the kitchen, with a potty chair for two or three days. The child is kept naked or with just a shirt on. I didn't feel Sarah had to be confined to one room since she is 9, not 2. She totally understood the concept of pooping on the toilet, she just didn't want to do it. I have heard many children are not comfortable with the idea of the poop falling away from their body. I guess Sarah was just so used to having a diaper or underwear.
Sarah's refusal to use the toilet has kept her from participating in so many activities. She has been held back at school because of not being potty trained. She hasn't been able to go to day camp during the summer because she wouldn't use the potty. I am so excited that so many more opportunities are going to open up for her. ;D
Chris
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Post by Chris on Jul 12, 2011 19:35:18 GMT -5
Jenn,
I haven't replied to your post because I just don't know what to say to make you feel better. I can't imagine being in your position right now. I guess my only advice is to love and appreciate your family cause we never know what might happen. It just seems like your family has gotten more than their fair share of illness. I will continue to pray for healing, comfort and peace all of you.
Chris
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Post by Chris on Jul 12, 2011 19:28:41 GMT -5
Sarah will be 10 in September and still isn't fully potty trained. She is certainly capable in every way of using the potty independently. Now for our success story.......... Until 9 days ago, Sarah had only pooped on the toilet a few times and those were times we caught her in the middle of the act. She always acted afraid to poop on the toilet although she will urinate on the toilet without a problem. My sister-in-law suggested that we try the Brazilian style of potty training. We kept her at home as much as possible and did not allow her to wear pants or panties. Would you believe that in the nine days we have tried this she hasn't had one accident? ;D The best part is that she has initiated going to the bathroom, we haven't had to remind her or anything. She still needs us to help wipe but other than that she is doing fantastic! ;D We still have to make the transition back to panties and pants. I think we will wait until she is firmly established in using the potty before I reintroduce clothing. I was thinking I would let her wear loose shorts in the house starting in August and hopefully by the time school starts in September she will be fully potty trained. We are thrilled! ;D Chris
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Post by Chris on Jul 12, 2011 19:17:40 GMT -5
I really miss the rate of activity we had in the past. I have had so many share words of wisdom and have been happy to help others. I was late getting in on facebook so I don't get any info there. I would love to see this site be active again. Chris
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Post by Chris on Jun 14, 2011 22:21:55 GMT -5
I think my nine year old does that on purpose. I have to tell her to bring her legs closer together. She likes to sit spread eagle with a leg on each side of the toilet. Chris
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