Hello, just looking for other parents of children with Down Syndrome

Deepa - posted 4 days ago

Hi .i too have a daughter with downs. She is 6 and is quite handful..

I also write about our journey as a mother daughter

http://aarshiandmama.blogspot.in

Edith - posted on 07/29/2012

Mary, I felt the same way. work, OT, PT, Speach, teacher, one doctor after another. Now we have a caregiver that helps a lot because he is on the now weaver. He does not have much going on now too and I had to stop working but some months it is steel 2 to 4 dr. appts. Just not as many as it was for Joey. It should get better in a few years as he; hopfully out grows some of the problems.

Mary - posted on 07/29/2012

I have a son who's 5 and it seems like i'm always on the go

Edith - posted on 07/05/2012

Julie
there is no magic manuel to tell us what to do with our children with or without ds. What works with Joey may not work for the next child. If Joey has taught me any thing it is 1. Let him know that we love him no matter what. Tons of hugs and kisses with praise for doing something good. Make a big deal over new things he does. 2. never let them do any thing good or bad unless we react to it with an exter hug or a quite reminder that what he did was wrong. I have found not letting him do something he wants to do with quite reminders works great with him "I sure would like to go get some ice cream but you are growned because ......... " or " You are missing a field trip because ........" A short grounding with repeted reminders done as if you were just talking to him works wonders. If he acts up at school it is best if corrected at shool with a discusion at home about it. Do not punish him at home for something he does away from but he needs to know you know what he did wrong and aprove of the punishment. We tried punishing him at home because the teacher did not want to. Things got worse at school and home untill I went in and talked to the teacher and the principal. I know it is hard to let other disapline your child but you need to let the teacher know what is ok and not. This something you may need to work on a while until you get on the same page. We believe who ever needs to correct Joey does it then and there. It is esyer for him to understand what he did wrong and why he is being punished. 3. With some stagges he goes through are close to the way his brother acted at the same age. 4. He is smarter than he lets me know he is. Some times he will do something that totally supprises me. I did not know he could look up things in the phone book because I do not think he can spell enough to do it. He wanted to call Pizza Hut to ask about a job. When he called me in to the room the phone book was open and he was dailing the number. 5. We have to keep trying something new when something stops working. Each day is a new day with us. I am learning new things each day just as Joey is. We supprised doctors in a teaching hospital with what we knew about downs when he was little. Today I ordered books for us to read to help teach us and his doctors about the problems both mental and physal health of being a young man.
I have been very proud of him when "normal" children were act up and he is setting quite and I always tell him so even in front of the bad childrens parents. One day he was only about 5 and we were in a fast food place with a woman who was dating a friend of ours and her children were going from booth to booth. Joey was giving me that look when I told him "thank you for setting here like a big boy while Miss Judy's children are running around acting ugly. You know that it is wrong to do that." That got a big smile from Joey and a hard look from Judy.

I personally prefer class room setting for Joey but now I understand why some moms and dads want to home school. We each have to use our parent's interwishion to do what we think is best for our child. Most of the time that is what is best for that child. An example of that was when he was in the 8th grade I wanted to hold him back there 1 more year. I did not think he was ready for high school. Every one (caregiver, careprovider, teacher, even friends) thought he needed to go to 9th grade. Dad said he agreed with me. The end of the following year "everyone" admitted we did the right thing. He grew up "mentally" a lot that year we held him back. So ALWAYS DO WHAT YOU THINK IS BEST FOR YOUR CHILD!!!!!!!!
Have you tried to teach him some sign? There are some times we have to use a form of sign and speach so I can understand what he is saying.

Good luck to all you mothers out there and thanks to the mother who is teaching me from her experices with an adult son with ds.

Shannon - posted on 07/03/2012

My daughter has downs and she is 12. She was full blast all the way. I was so stressed. My answer is send them to school. Lol I'm picking. Finally she just calmed down. I have 8 year old twins and she loves to irritate them and make them cry. She's still a hand full but I guess maybe I just think it's better because all the years in the hospital and everything it seems easier. She still drives me crazy but she is more calm the older she gets. You just have to get on to them and treat them like any other child. They're very smart and Alyssa wants me to do everything for her and I finally stopped because she started abusing it and knew what she was doing. My husband still let's her get away with everything so I get on to him now.

April - posted on 01/16/2012

I have a 2year old son with down syndrome.

Julie - posted on 01/09/2012

hi,i hav a son with ds he turned 10 in october,and is also getting to b a "handful" i find now his true age of 10 shows thro in stubborness and temper.he can b very strong willed and i sumtimes sit there and think,will i b able to handle him at 16 and adult hood,hes strong enough now.guess its down to communication,which sumtimes just isnt there.wish he came with a manual lol.x

Penny - posted on 10/23/2011

No Alexis I havent checked out Baby Center but I will now. And sadly where I live there are no support groups :(

Alexis - posted on 10/20/2011

Hey! Have you been on the Down syndrome community board on Baby Center? It's really good, too. Also, have you looked into your local support groups and the Special Olympics?

Penny - posted on 10/16/2011

Thats awesome Tina ♥

Tina - posted on 10/14/2011

Thank you for the info! Natalie is much happier now, the diet has done wonders! She laughs more and her vocabulary is really growing too! Her eye surgery went well! Glad you are seeing results as well!!

Penny - posted on 10/14/2011

@ Debbie, I'm just very concerned right now about the puberty thing (biting my nails) I have no idea how shes going to react.

Penny - posted on 10/14/2011

@ Tina, God Bless your family in all that you've endured.
Potty training was not easy, it seemed to not bother her at all to be wet.She was to lazy 1/2 the time to go up the steps and actually go to the br. But I took her every 2 hrs regardless. My advice is to start early, it took yrs to get the job done, I think she was 7 before she was completely potty trained. I will deffinately be checking my mail more often, if I can help you in anyway, just ask.

Penny - posted on 10/14/2011

WOW! Thnx everyone, I should check my mail more often. Since i posted Caitlin has been put on Welbrutrin and she has calmed down considerably, we can actually go to a store. At the beginning of the month we had Dr appointments at Dartmouth and wow, so proud of her. It was a long morning of Drs and out to eat and even shopping and no melt downs, :) Now my worry is puberty any advice on how to handle that?

Kate - posted on 09/11/2011

Hi Penny!
My daughter will be 10 in November. She is pretty even tempered but dislikes transitions. During these times, she can be stubborn and her willful behavior has affected her learning at school. Overall, she is doing well but she is stubborn on an every day basis. She was daytime potty trained at 8 and just this past July began staying dry through the night! No more pull-ups! Hooray! Were you looking for any advice pertaining to something specific? My latest concern is when she starts her period. Not sure how to deal with that one!!!
Good luck and best wishes for your beautiful daughter!

Melinda - posted on 09/08/2011

Hi. Just a note about when you are out... I have recently noted how many "normal" children act up when they are out and about--much more so than my lil' abigail. Up until recently, I was busy trying to keep up with my two and avid "that look" to notice that they are much calmer and act better than ALOT of other children. Now I'm more relaxed so she is too. I'm also trying to keep her involved in whatever the task is we're doing. For example, she picks out the crackers, puts the yogurt in the basket and pays the cashier. Also, i used to be mortified when she would just hug random people. But most people don't mind and it opens a door for new friends or least some positive conversation. I don't know if this helps any but things are getting better for us.

Edith - posted on 08/26/2011

You are a smart mom, Penny. Never underestimate her. We all wonder how much they understand but I bet she is like others I know that understand more than they want us to know. Yes, I know that look all too well. The problems will probily get worse as she gets older. I keep reminding myself that they are different in some ways from my older child but some are much like big brother. I have to just handle them with a twist added. You do not owe an explanation to anyone even if you think you do. I have seen "normal" children act in ways that Joey looked at me in that confussed way that said "why doesn't the mom or dad say something to them." So it is not only our special needs children that act out. Just remember to always correct in the same way every time she acts up. If you miss one time it will confuss her. I found with Joey that it does not matter where we are he expects to be corrected or praised as applies. He would act out just to get attion at school until the teacher started to punish him. Then he would stell test her to see what she would do. In many ways they are much the same as normal children. They just need more love shown to them.

Penny - posted on 08/26/2011

Thnx everyone for answering. I really just wanted a place to go to for asking questions when I have them. Have tried other DS groups but when i asked a question i hardly ever got an answer. I am very happy to hear my girl is not the only handful out there! Sometimes I get those "looks" from other people when we are out in public, you know "that look"? And I just tell myself I'm doing the best I can. I have to admit, I probably did it to myself/ her, I was way to easy one her for her 1st couple yrs, now trying to reverse her behavior is very difficult. thnx for the advice. I do try to reason with her but sometimes I wonder how much she really understands or maybe shes just not letting on she understands as much as she actually does. lol, Shes sneaky that way.

Edith - posted on 08/26/2011

Sharon did a great job at covering most of it. Joey will be 18 next month. Love, hugs, talking to them a lot about the things they do good and when they do something wrong react in the same quite explaining way as to why it is wrong each and every time. I often find I have to put on my happy face even when I am crying inside because he gets upset when I am upset even when he should not. Make your child feel important. A great example is Joey is great with sign language. Yesterday his teacher told me she is having trouble with one of the new students (new to the class). She is new to this class and does not know what all Joey can do. I told her he is good with sign and she told him she needed his help until she could learn. He came in telling me he taught her to tell the other student that what he did was wrong. He was smiling from ear to ear. Never underestimate what your child knows. Joey teaches us that often. He is a lot smarter than he lets us know he is. You will find that we are all here for each other and will help if we can. God bless you and your family.

Sharon - posted on 08/25/2011

Alison, I think bobby and other children with Downs need direction more than "normal" children. They may learn slower than other children but they need help to follow the rules just like anybody else. I think firmness is more of the word. They are generally more tender hearted and do learn by example, kindness. Nick would do some deliberate, dastardly things. It was always when he was overly stimulated. Time outs worked well, sometimes time out meant in the corner because he would spit, turn around and laugh. He had to know we were serious, then it came to "do you need to go the corner?" We got a "no" and all was good. We always talked to him about what he should have done differently. Disrespect is disrespect. He showed it at 4-5 years old, his older sister got the notion early then acted disrespectfully later in the tweens. I totally am behind Love and Logic-www.loveandlogic.com. Its all common sense and is good tools for parents.

Alison - posted on 08/21/2011

ive got a son called Bobby, he is 5 years old, he is getting a handful, my husband is the one to tell him off, im too soft

Kari - posted on 08/17/2011

I have a 2 yr old daughter thats 90 mph at all times..lol..im here for ya!

Maria - posted on 08/17/2011

In what ways is she a handful?

Sharon - posted on 08/16/2011

My son has Downs and is now 21. It seemed like he always acted up when there was a change of routine, or somehow his needs weren't being met. I know people with developmental disabilites are very "need" driven-it was brought to my attention one time when I took a class on the DSM-!V-the diagnostic and systematic manual of mental disorders-fourth verson. Somebody did a study of picking out the major tiers of the DSM-IV and it does seem true. Nick seems to be a handful around 2-3 years old, he was really cute and fun in preschool. Then he butted heads with the kindergarten teacher and the first grade teacher, he told me "she doesn't like me". We moved because we had to and switched schools. He had a teacher that was more into singing and playing the piano to learning kind of songs. He did well. We have had teachers and classroom aids through the years that worked really well and some didn't.
When I see Nick is frustrated, I use the feeling word and offer a few choices. sometimes he says he is confused. He does have a problem when I talk too fast and I know I need to slow down. He does sense when I am frustrated with him and yes, I need to settle down. I look at it as they need help and don't learn as fast or figure things out like"normal" people but he can when he is encouraged. I think feeling words are important and they need to know what to do rather than not what to do. Hugs, many hugs are needed but I think they need information and support.

Tina - posted on 08/16/2011

I have a daughter with ds and she is five and is also a handful, I just found out she has peanut, soy, and gluten intolernces. Taking all of that out of her diet is supposed to help her behavior, we'll see it's only been a week but I am hopeing it will make a difference! I love Natalie so much but find I do not have enough energy to keep up! She is getting eye surgery in 2 weeks and I am hopeing this will help as well, I think her eyes irritate her and that makes her angry. She is a great sleeper and loves to play with dolls, and swinging, also loves playing with water! She has survived leukemia and her sister passed away in may:(.
Natalie makes everyone laugh with her quirky curious personality! I have her on kinder vital, it is a liquid mult-vitamin that has calcium and vitamin d which is supposed to make kids happier. It is nice to know we are not alone! We take it one day at a time and count our blessings! Natalie has taught us not to be so concerned with things(she has broken so many glasses). It's nice to be free of that, so when kids put things out of place and make a mess it doesn't bother me anymore! I hope I've helped if you have any questions let me know, but I could probably ask you a lot since your daughter is 10, how did potty training go??

Jennifer - posted on 08/15/2011

i have a son with downs and he is gonna b 12 on sept 3rd

Debbie - posted on 08/11/2011

What do you need to know? I have a granddaughter age 15 with down syndrome. Yes she is a handfull.