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Post by Jessie on May 5, 2006 20:34:15 GMT -5
Isn't it funny that some of us that have never met Susan & Emily can still find this heartwrenching? I think it's because Susan comes across as such an awesome person and mom that we feel like Emily must just be a true sweetheart too. I hate those teenage situations. We all know the pain of going thru our teenage years but our kids have to have the d**n Ds thrown on top of it. It's just not fair! Give her a big HUG for all of us Susan!! Keep us posted on how she's doing. Jessie
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Post by hidyperson on May 5, 2006 22:17:00 GMT -5
Carolyn - I live with an adult with DS and there are differances in how DS manifests itself in children and adults with DS. It is very important that one be aware of the adult traits and not ignore them because we don't like them. Early guiding through the development of these traits can have a huge impact on adult life.
It not a well known topic amongst parents of children with DS, and meeting some adults with DS isn't going to tell you what the routines at home are, or the behaviours. Check out the articles, they're well worth reading. My unsoclicited advice at this stage is keep your kids flexable, and keep them engaged with the real world. Your kids will be adults longer than they are children.... - Jeff
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Post by Deannalee on May 5, 2006 23:53:32 GMT -5
Susan, I am glad you posted this. Even though Justin is 3....I still like to know what to expect. I am soooooo glad this doc worked well with Emily and got her to open up. When you were first writing....my head was saying it sounds like she just needs someone...a peer....to chat with. Girls love to talk together at this age. If no one is going to take the time to listen to her at school.....like you said....she can talk to herself without people questioning her. I know for myself, if I feel uncomfortable with a situation or person....I can become a bit withdrawn and have downcast eyes. I think that is just a response many of us have with uncomfortable situations. So.....overall....I am glad it got nipped in the bud before it became a depression issue. This is a fear I have with my own almost 13 yr old daughter. Thanks for sharing this so much.
Deanna
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Post by chasesmom on May 6, 2006 0:36:05 GMT -5
Susan, I am on some good drugs from the hospital tday so scuse any typos and i cant elieve it took this long to come up wiht this idea but I think it is perfect for our girl.........."circle of friends" it is where the school gets involved and asks Emily's class mates if any of them want to be involved in her circle of friends and then they give them each certain days and they hang out wiht her and make sure she is involved with her peers and doing the same kind of things, just keeping her involved and giving her a chance to participate. That way they could even adjust the girls to things they need to do on their days, like remind them to let her talk even if they dont understand every word, discuss things she likes (MUSIC and dancing seem a big thing to me for her likes) and maybe on some days they could just hang out in the counselors office and play the music or dance. I think wiht a bit more time to think, you and the school and us here could come up wiht alot more ideas for this circle of friends for her...but the key thing is..it has to be girls who want to do it. I am excited, I think it is a great idea!!!!!!!!! What do you think my friend? huggers to you and my baby girl, Robin
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Post by Emilysmom on May 6, 2006 7:58:38 GMT -5
Robin, I'm so glad you're doing well enough to be up and thinking of awesome ideas at 1:30am!!! I heard something about the "circle of friends" at a Ds conference several years ago, but we were not dealing with this situation and I felt that Emily had friends at school and was happy so I didn't pursue it then. I KNOW there are girls who would be willing to do this............there are girls who always come over to sit by her at her brother's basketball/soccer games and who are thrilled to see her at the mall, etc. But, SHE has not always been as receptive to them as I would have liked! Her response to friends was another thing the psychologist role played with her, and I hope that will help too. This is definitely going to be high up on my list of priorities for this IEP meeting!!
Susan
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Post by meghans_mom on May 6, 2006 8:41:04 GMT -5
Susan - wish I had something good to add...my heart broke for you & Em when you described the situation -- but I am glad that you got right on top of it and the doctor (therapist? can't remember a page later) was able to help Em open up. I think (mostly) everyone gave such great advice, and there's not much more I can say except that I am thinking of you guys & sending positive thoughts & prayers. hugs, laurie
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Post by Jackie on May 6, 2006 9:47:21 GMT -5
SUSAN...you and I have talked about the self talk. From my experience on a teens and adults message board I can say it is VERY common and distressful for the parents. My own EMILY is a master of it...it seems to be the way she works out her angst and Katie says when she sometimes overhears...it's very insightful as to what is going on in her psyche.
I think the main problem for most of us who have kids who are prone to this is getting them to do this only in private. In MY own Emily I have always thought this is sort of like thinking out loud because hers seems to always concern the here and now of what is going on or what has just happened. We usually suggest she go to her room and work things out if she just can't or won't relate to one of us over the issues.
As I told Susan earlier, I think that often when our kids try to join in a social group...the others are uneasy and WANT to include them...but....the way they often do that is by asking a string of questions...i.e. "I like your shoes...where did your mom get them? Where do you get your hair cut? Where did you get that neat ring? Who is your boyfriend?"...and as we all know...processing questions is sort of a 'trip' for many of our kids and most kids are too impatient to stand around and wait for an answer. So...the easiest way out is just to drop your head and look at the ground...which goes over like a lead balloon with middle schoolers.
I am so happy Susan that the psychologist was able to get Emily to voice her opinions on all of this...and find out what matters to her. You are very lucky to have found a person like this and it might help you out thru the years with Emily if other things come up.
I think I would certainly make the social inclusion a significant part of her IEP. And handling the free time at recess by either cueing in a circle of girls she would like to be part of as to how to relate to her best...or...by finding something else for her to do at break like working in the office or something like that...anything to keep her from standing around by herself.
As I told you ...my Em was lucky and very early on became very good friends with a girl who had significant LD but was not sped so she always had someone to be with in situations like this.
Perhaps there is someone else at her school in need of a friend. too, who would like to hang with her from time to time. Maybe the school could find someone like that an help facilitate a friendship.
Middle school is s tough time in many kids lives...not just our kids with ds. Thank goodness you have found someone to hold your hand with all this. Keep us posted.
Jackie
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Post by Claire on May 6, 2006 11:53:18 GMT -5
Kleenex here too. I feel so sad for Emily, but am proud you did get the help needed. Adam is on;ly 8 but I am not loking forward to the teanager years. Not much advice I can give you as I am not there yet, but even though Adam is 8 he is one that doesn't really interact unless he is made to. He is very passive. Hugs to all of you.
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Post by rickismom on May 6, 2006 16:20:00 GMT -5
While most teens with DS will self-talk, they are not going to be doing it when they are involved it other more positive things. Jeff, I see no reason here for negativity. Emily just needs a bit of support. Now I saw Jeff's second post. Yes, we have to prepare our kids to be flexible, and interact with others. TRUE. They need to learn this JUST like all the other things we teach them. Here, however, I think the problem has been well addressed. Just it needs to be continued to be taken care of and noticed. But SINCE Emily IS so smart and sociable in general, I am confident that it can work out well for her. I think that this psychologist was GREAT, and I am glad that you seem to have found the problem. Good integration should also include social aspects. Integrations weakest point is the fact that keeping meaningfull friendships is hard as they grow older. Therefore: 1- her IEP should include things necessary for social aspects. 2-see if you can broaden her friendships with extracurricular activities (church chior, drama club, etc.) 3- being honest about the realities of her having DS, discussing it with her, etc (I'm sure you've done this...)
4- if possible, get her once a week (or 2 weeks) into a club along with other high-functioning kids with DS (or other disabilities) I have done this for Ricki, and it has been very helpfull for her. First, it has given her extra friends (her school friends live a ways away.) In addition, it has helped her come to terms with the fact that she has DS. Also, IF I ever have to move her from integration to special-ed (even if it is a "work preparation" program) , she will now at least know that kids with DS are people too.
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Post by hidyperson on May 6, 2006 21:36:28 GMT -5
Susan seemed to appreciate the help and info, I wish the rest of you would... - Jeff who really wonders why he bothers.
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Post by CC on May 6, 2006 23:24:54 GMT -5
JEFF I say BOTHER cause I appreciate hearing what ALL have to offer ;D and although I may not be dealing with somethings you are yet, one day I may. Now Hmmm tell me for some reason I click on the links you posted and I can't get to them and I am very interested in reading them. Its late and I have to leave for Boston in the morning so maybe when i get back I can play around with the addy's and see if I can get them to work. THANKS for sharing them CC ~
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Post by Mary_L. on May 8, 2006 10:09:12 GMT -5
Awww Susan~that must have been hard to hear Emily say that. It sounds like you saw a great doc and hopefully things will get better for Emily at school.
Out to eat and shopping afterwards~it does sound like a good end to the day!
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Post by Jackie on May 8, 2006 17:27:36 GMT -5
Mary ...and Susan...the group that Mary talks about is exactly what I spent years trying to get off the ground here. Not just for DS but for several teens who were developmentally disabled. I thought how cool a "Bob Newhart" (for those of you old enough to remember his show) group would be with a facilitator. And besides discussing feelings I thought the facilitator could also stay on top of what was new and current on the 'teen scence' and make sure the kids knew how to 'tune in' to the here and now of kids their age at their schools. Tuning in is easier if you have other kids about the same age...but for those who don't ...its hard to know sometimes what is cool and what isn't.
Jackie mom to Emily 26
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Post by Connie on May 9, 2006 15:15:55 GMT -5
Susan, I've not posted because I've not been sure what to say. But, my hopes and prayers are that it is a PHASE she is going through. All children, young adults and adults go through them it is just a normal part of developement for all of us no matter what the age. I know Griffin and Gray are going through the mouthy phase and Michael (DH) is going through the non-compliance stage (LOL)... I pray this will come and go for you and Emily. Connie
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Post by Debbie on May 9, 2006 19:46:26 GMT -5
Susan,
I totally understand Emily. You want so badly to be accepted and act and be like the other girls. You want to talk about boy's, makeup, TV and music. It can be all so intimadating you see, especially if you feel and know that you are different. I understand completely. And if you feel intimidated you tend shrink back and observe instead. You are afraid to talk especially if you have a speech problem like I did. When I became nervous my nystigmastism would get worse. I can't focus my eyes. I was shy and couldn't look anyone in the eye. And I stammered when I tried to look anyone in the eye. I just couldn't do it. I eventually came out of this extreme shyness but, it is still there inside of me. It comes out when I am in groups with people I don't know. I tend to hang back and listen.
As far as self-talk well, yes I do that from time to time but not in public. At least I try not to. It depends on what is on my mind and if something is bothering me. I noticed lately I am not doing this as much. It is only when I am really angry or upset.
I think it is great Emily has a doctor to help her. Do the Down syndrome clinic's help adults too? I have never been to one. They seem so far away.
You aren't alone in this Susan. And she will get better in time because she has someone to talk to like you and this doctor.
Jeff has made some excellent points. Thank you Jeff. I am glad you bothered to add them.
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