SMS Discussion

ericdeko411 (-=hidden=-) · Posted: 10/13/09 Post subject:

Jean,

I just read your post and I know the feeling. My wife and I are struggling both and very tired and exhausted with all these. We are still hoping to get through this and I hope you too.
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Eric Deko

denny58stout (-=hidden=-) · Posted: 01/23/10 Post subject:

Fantastic!! I'm Denny Stout ..I'm new here and I Just want to share this quote as my first post here...

"The less you can live on, the more chance your idea will succeed. This is true even after you’ve 'made it.'.

Make it a Great day people...
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Denny Stout

Nico's Mom (Jean) · Posted: 01/29/10 Post subject:

Well, Denny, you are right!

Nico has been doing much better. We have settled into a long term routine and he is doing well in ALL areas.

He is so affectionate and loving. I am a lucky mother.

GailR (-=hidden=-) · Posted: 01/31/10 Post subject: it does get better

If I write a book about my daughter Sonja it will be titled, "It does get better", we have all been to hell and back a few rounds, she is 32 years ago, the light of my life and was just diagnosed with SMS on Friday, 2 days ago....
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Gail
Mother of Sonja diagnosed at age 32 1/2010

Nico's Mom (Jean) · Posted: 03/09/10 Post subject: Sonja

Wow. Congratulations on the diagnosis. I am sure it is a relief to have an explanation. I cannot even begin to think of what you went through.

pattischiller (-=hidden=-) · Posted: 06/30/10 Post subject: THIS SUPPORT GROUP IS SO WONDERFUL

I am learning how to maneuver this forum, and it is wonderful to read all the comments because we all understand! Our son Fredrik is now working in the community where he lives (a small rural town), things such as landscaping, filling the pop machine downtown, delivering mail among the group homes. We noticed he now waves at every man he runs into - he picked that up from working with the guys. It is so good to see that even tho he has surprised a few guys who have gotten this hearty wave from Freddy, who they do not know! He calls home about two times a week, wanting to have a home visit. It is hard to tell him that he will come home a different week - but it is good to talk with him on the phone. He has a hearing aide now, just got it a month ago, and he so far keeps it in. he wears it only with supervision for now. We are looking forward to having a family outing at Wisconsin Dells next week. Freddy will be able to enjoy the water rides with his new brother-in-law and ride the roller coasters also. Just like our lives are - roller coasters. Accepting that helps me to cope! Take care everyone.
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Patti Schiller

Jessica (-=hidden=-) · Posted: 07/04/10 Post subject: Pity Party

Patti,

Thanks for sharing about Fredrik. I always like hearing how the older ones are faring. Sounds like he has learned some good skills and is getting along fine. I like your comment about the roller coaster and our lives. It is so true. Hope your family outing is lots of fun.

: ) Jessica (mom to Rachel 13 sms)

Bens mom Nancy (Glenn & Nancy) · Posted: 07/07/10 Post subject:

Yes I agree, I like to hear how older SMSers are doing as it gives me hope for Ben's future & maybe someday he will learn to have a little independance to some degree. Thank you

pattischiller (-=hidden=-) · Posted: 07/16/10 Post subject: OLDER SMSer's

Thanks ladies. I am glad to share. I have finally submitted the form to the clinic for Fredrik's height and weight since 1998 for the NIH study.

Some info - Fred attended public school in the LD classroom. He was mainstreamed for some classes such as library time, shop, Home Ec. He was in a small school (town's pop 700) so everyone knew him and he knew everyone. His favorite thing was visiting the teachers and office staff. His job when in his final year was to fill the job machine and he was so proud to do that, but he did not like anyone watching him fill it. "I can do it myself." He had a few special classmates who would take Fred under their wing. He did not like music class "It hurts my ears." but he would sit in the tent in the classroom and sing along during music class. Yes, there were behavioral problems along the way and he got sent home several times, even broke a few things. One time when I went to LaFarge (the town where he lives in the group home) to pick him up for ahome visit, I walked tohis school and then he and I walked back to the home. He was so happy to walk home like he saw the other kids do. It is one of my best memories. He graduated in 2005, his ceremoney being during a rehearsal. He had a nice party in the classroom and now his diploma is displayed on his bedroom wall at our house.
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Patti Schiller

Jessica (-=hidden=-) · Posted: 07/17/10 Post subject:

It is nice to hear a synopsis of Fredrik's schooling and graduation. Rachel is nearing the high school years. She will be in 8th grade when school starts. I know in HS her schooling will look much different, but I don't know what to expect or what graduation will be like. We live in a big city, but she is the only SMS child in our district (except for one in preschool).

Thanks for sharing.

: ) Jessica

Bens mom Nancy (Glenn & Nancy) · Posted: 07/17/10 Post subject:

Jessica that is my fear now too. Ben is 11 yrs & our present school has a great program in place but does it change a lot in our HS??? Something I definitely will be looking into before Ben walks through the doors Smile

HS can be such a difficult transition for a "normal" teen, not sure how an SMSer will feel!

pattischiller (-=hidden=-) · Posted: 08/06/10 Post subject: high school

I found that high school for Fredrik was a bit more kind than junior high in that the other kids were a bit more kind and understanding. By graduation time Fredrik had a couple of actual friends. As always, it helps to attend all meetings Re your child and figure out what will help your child thru the high school years and speak up when necesary like we know we have to do from time to time. I am no expert on the subject but just to let you know high school can be as good an experience for our children as for any child.
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Patti Schiller

Bens mom Nancy (Glenn & Nancy) · Posted: 08/06/10 Post subject:

That's great Patti, I personally need those words of encouragement & positive stories of the older SMSers... it gives me hope, desire & determination for Ben's future Smile

I agree, the meetings for our kids are extremely important, I personally have never missed any app'ts but I am also there everyday to drop off & pick up Ben (with his brother & sister) from school. I have to say you would not believe the parents of special needs that do not interact with the educational dep't of their kids life, it is like they send them in for child care & don't worry about the path they take (unless something goes bad/wrong then they want to know what happened or who is responsible), have witnessed it for years Sad

I have changed a few things in Ben's day to day routine & I am very particular about who gets to work with my son! There are a few who will NEVER work with my child & I am very sure they all know why. School is a place for Ben to learn but also for variety & peer interaction, I can not have him disliking the idea of attending so we always have an aide who shows him a happy & encouraging good time but can keep him in line without chaos or loud agressive behavior or words.
We have a few years before Ben hits HS - (I have 1 graduated & 2 in HS now) but thank you again Patti... maybe we will move to a smaller community for Ben's HS years Smile

LOL
Ben's Mom Nancy