Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Many thanks for the welcome . This is an awesome group. I need tons of advice, but first I'll give a little more info. I'm a , married to . is my 13yr. old daughter, and Carson is my 11yr. old son . Diagnosed with Trisomy 21 at birth , after many evals we got a ASD diagnosis last year . I am a registered nurse , but am totally lost with Carson. Nothing that we have done, since three months old has helped . I have tried to toilet train for 2 yrs , without sucess . He is non verbal , and communicates his needs to us , but when he is sick , it is a guessing game. He is so sweet , but extremely combative when it comes to doctors and hospitals . He has had 6 sets of PE tubes, chronic URI's and ASD repair at 24mos. I guess I would dislike doctors too. I do not work any more , because I stay home with Carson . I really have no one else to stay with him, my husband does , when he is not working. So any help or advise on Toileting, feeding and communication would be great . So glad I found you. Oh , by the way we live in Baton Rouge, Louisiana , just outside of New Orleans. Thanks again. a Lejeune , Carson's Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2011 Report Share Posted January 16, 2011 a, My son is 13 his name is and he was diagnosed at birth with DS and autism at five. He too is non verbal, does not use signs that well and has history of SIB behaviors and aggression to others. I remember being told by Dr. capone http://www.walkersresearch.com/profilePages/Show_Executive_Title/ Executiveprofile/G/_T_Capone_100024687.htmlseveral years ago that puberty would be hard but it would get easier as he gets older??? I think we are right in the height of puberty right now they did some blood work a few months ago and his testerone was off the charts. Based on his numbers they felt he had peaked. also has had chronic URI, chronic sinuitis,MRSA infections of the ear and scolisis. We have tried a myriad of meds over the years. Most recently he had a horrible reaction to amantadine. Made him VERY aggressive and OCD. We are now on effexor and clonidine if we need it. We have tried everything for sleep. From melatonin to even ambien. He would goes days on three hours sleep sometimes. It is better now though or should I say manageable. We live in NC and have what they call CAP services so I do have help with after school although the help sometimes brings its own set of issues:) I have three other children so it is hard. We have one helper that has been with us 10 years and she only can work weekends now but she even takes him to spend the night which gives us all a break. Our son is in an Autism Class at school which here means the class is capped at 8 students with a teacher and two aides. He also has a one on one due to his SIB behaviros and he also has some choking issued when he eats. He over stuffs his mouth then chokes. I think for us the hardest part is his when he is sick and cant tell us what is wrong. I cant imagine not being able to communicate. I recently ordered a DVD called " A Mothers Courage Talking Back To Autism " . http://www.amotherscourage.org/ This mother eventaully travels to Texas to visit Soma Mukhopadhyay to learn about the techniques she uses with severely autistic non verbal children and adults. I have begun to use some of her beginning methods with with some luck. We also use a picture communication system with real picutres because board maker was too abstract. http://www.halo-soma.org/main.php? sess_id=e03f73bbe35e2999701f254a36388374 Has your son trid any meds and what behaviors is having that is most challenging? How is school situaion? Cna you get help where you live? We had to be onthe CAP wait lisst for three years. It is the only qualifies for that is NOT based on income. We do not qualify for any other programs because of income. hope it help mary zahn nc > Many thanks for the welcome . This is an awesome group. I need tons > of advice, > but first I'll give a little more info. I'm a , married to > . is > my 13yr. old daughter, and Carson is my 11yr. old son . Diagnosed > with Trisomy > 21 at birth , after many evals we got a ASD diagnosis last year . I > am a > registered nurse , but am totally lost with Carson. Nothing that > we have done, > since three months old has helped . I have tried to toilet train > for 2 yrs , > without sucess . He is non verbal , and communicates his needs to > us , but when > he is sick , it is a guessing game. He is so sweet , but extremely > combative > when it comes to doctors and hospitals . He has had 6 sets of PE > tubes, chronic > URI's and ASD repair at 24mos. I guess I would dislike doctors too. > I do not > work any more , because I stay home with Carson . I really have no > one else to > stay with him, my husband does , when he is not working. So any > help or advise > on Toileting, feeding and communication would be great . So glad I > found you. > Oh , by the way we live in Baton Rouge, Louisiana , just outside of > New Orleans. > Thanks again. > a Lejeune , > Carson's Mom. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2011 Report Share Posted January 17, 2011 Welcome, a, to the group! We look forward to learning more about Carson and the rest of your family in the months to come. My name is , and my son, , is 7 yrs. old with DS and PDD-NOS. He is also non-verbal and is very recently " timed toilet-trained " , where he is successful most of the time if we take to the toilet hourly. wears a goodnite diaper overnight, underwear only during the day and just very recently started underwear only on the bus to and from school, as well as local outings on weekends. attends an " alternative " public school (The Developmental Learning Center in Warren, NJ) in northern New Jersey that is mainly for students (ages 3-21) on the autistic spectrum who are successful with the ABA teaching method. 30 of our local school districts send students to the DLC which offers both academics and vocational training. You can see more at www.mujc.org to get an idea of what this program is like. Does Carson use an augmentative communication device and/or PECS, sign language? What school program does Carson attend or is he homeschooled? You will find a wealth of experience and support here on the list-serv, so fire away with those questions! PS- I love New Orleans and its fine cooking and hospitality- had one of my best food and jazz music vacations with my group of " gal pals " there! Best, Mom to , 7 yrs. old DS/PDD-NOS Colon Cancer Survivor, (3/19/10 - last round of chemo) To: From: lejeunepaula@... Date: Sat, 15 Jan 2011 19:05:55 -0800 Subject: My son Carson Many thanks for the welcome . This is an awesome group. I need tons of advice, but first I'll give a little more info. I'm a , married to . is my 13yr. old daughter, and Carson is my 11yr. old son . Diagnosed with Trisomy 21 at birth , after many evals we got a ASD diagnosis last year . I am a registered nurse , but am totally lost with Carson. Nothing that we have done, since three months old has helped . I have tried to toilet train for 2 yrs , without sucess . He is non verbal , and communicates his needs to us , but when he is sick , it is a guessing game. He is so sweet , but extremely combative when it comes to doctors and hospitals . He has had 6 sets of PE tubes, chronic URI's and ASD repair at 24mos. I guess I would dislike doctors too. I do not work any more , because I stay home with Carson . I really have no one else to stay with him, my husband does , when he is not working. So any help or advise on Toileting, feeding and communication would be great . So glad I found you. Oh , by the way we live in Baton Rouge, Louisiana , just outside of New Orleans. Thanks again. a Lejeune , Carson's Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2011 Report Share Posted January 17, 2011 Hi a, Welcome to the list. We go with blatant bribery for yucky Dr visits and yucky anything! For blood draws, Darwyn (age 6) gets to see the chocolate doughnut that he'll be eating as soon as the blood is drawn. (I get a donut and coffee too - blood draws stink) The last time he got a haircut, he had his portable dvd player with Barney playing and I held his hands so he couldn't grab the haircutter, while his sister spooned chocolate ice cream into him. This was a huuuuge success. Also, we use a modified version of ABA type incremental behavioural learning, so he had been " practicing " pretend haircuts with his behaviour interventionist for more than 6 months. For toileting and bathing we have a picture system that shows a bath or toilet and then after Darwyn can choose TV or music. This has helped get him to go to the bath or toilet more easily. Also - for communication, we started with signing (the Signing Time DVD's are great for learning basic ASL) and then we found someone who taught him PECs - a picture communication system - and this has helped immensely. Although no matter how hard we try, many of our kids just don't seem as motivated as parents to succeed with toilet training. Sigh. Darwyn rarely communicates " toilet " , but can repeatedly request " chocolate ice cream " and " pudding " . Lastly, we just got an iPad last week and it certainly appeals to Darwyn. I imagine he'll likely move onto a speech app at some point, but still undecided which one. Phew - I'm sitting here typing and rewinding Barney repeatedly to the Twinkle twinkle little star song to keep him happy. Better go get him in the bath. If you want further info on anything I mentioned, let me know. Mom to (age 10 NT) and Darwyn ( age 6 DS ASD and a few heart surgeries) , Canada Sent on the TELUS Mobility network with BlackBerry My son Carson Many thanks for the welcome . This is an awesome group. I need tons of advice, but first I'll give a little more info. I'm a , married to . is my 13yr. old daughter, and Carson is my 11yr. old son . Diagnosed with Trisomy 21 at birth , after many evals we got a ASD diagnosis last year . I am a registered nurse , but am totally lost with Carson. Nothing that we have done, since three months old has helped . I have tried to toilet train for 2 yrs , without sucess . He is non verbal , and communicates his needs to us , but when he is sick , it is a guessing game. He is so sweet , but extremely combative when it comes to doctors and hospitals . He has had 6 sets of PE tubes, chronic URI's and ASD repair at 24mos. I guess I would dislike doctors too. I do not work any more , because I stay home with Carson . I really have no one else to stay with him, my husband does , when he is not working. So any help or advise on Toileting, feeding and communication would be great . So glad I found you. Oh , by the way we live in Baton Rouge, Louisiana , just outside of New Orleans. Thanks again. a Lejeune , Carson's Mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 @ paula best advice get him into an aba program. Picture Schedule very important. Go to any training with aba you can find. My son is 14 ds/au/hd (hirschsprungs) my son is doing well on potty training with schedule. But because of the HD we still have him in pull ups. Just in case. Aba helped my son the most Gerrie outside of Houston Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
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