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    Old 03-23-2001, 12:54 PM   #1
    jtsmom
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    Hi! I am new to this form of support, but very experienced with being the parent of an autistic child. I have a beautiful loving 7 year old little boy, who is considered profoundly autistic and non verbal. I have just started to potty train him after many other attempts, and I am happy to report that after 2 weeks, he is beginning to catch on. I was curious if anyone has any suggestions on different things I can try to help his accomplish this goal. Any and all help is appreciated.

     
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    Old 03-23-2001, 02:52 PM   #2
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    Congratulations on the potty training. My son is 8 and is also autistic and non-verbal. I don't have any advice for you because my son is not potty trained. I have always felt like he knows more and is capable of more than he does. Was just wondering if your son is that way. I have never even made a serious attempt to potty train him. I would be curious as to how you're 'introducing' your son to the potty. If he's catching on, then I would say GREAT and keep up the good work. Hope someone will have some advice for you instead of wanting advice from you like me. Good Luck to you and your son!!

     
    Old 03-26-2001, 05:45 AM   #3
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    My son and your son sound alot alike. I am like you, I believe my son has so much inside that he is struggling to get out. I am so happy to finally be able to communicate with someone who understands this. What kind of program is your son in? My son attends a special school, that is part of the public school system. I am so lucky that his teachers and aides are phenomenal. They are helping with his potty training by following through at school. I introduced my son to the potty by putting him on one of those adult potty chairs that have arms to them. He feels more secure with this that the toilet, but I am happy to say that he finally went on the toilet at school Friday. I am hoping that he will eventually get the hang of all this. I know it will take time.

     
    Old 03-27-2001, 02:53 PM   #4
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    Hey! My son is also in a Special Ed. program in our school system. I have never pushed the issue of potty training because I just never felt he was capable. Quite frankly, I've done so much for him for so long that he's just plain lazy sometimes. Everyone that knows him feels he's capapble of more than what he does as far as being independant. He does feed himself most of the time. Comparing notes here, I was just wondering how much your son understands. Meaning, does he understand if you tell him "pick up the ball"? or simple things like that. My son doesn't respond to stuff like that so much, but if I ask "Do you want a bath?" off to the bathroom he runs. If I ask if he's hungry to the kitchen he goes. Stand up, sit down, come here. Simple things like that. I have been told that he has learned these because they are VERY simple EVERYDAY commands and that he could learn more if he can learn these. I am often at a loss as to where to begin, or he is so resistant that I give up. I truly want to get ABA therapy for him, but am having a hard time pulling that one off. It is expensive and I haven't found anyone in my area that is even trained to do it or even heard of it. He should have started it much earlier because the earlier they start, the better the results, but I didn't even hear about it until a few month ago. Hope the potty training is coming along nicely for you guys. I am giving serious thought to getting very serious about it this summer while he's out of school and just taking him to the potty every hour on the hour or something. I think he understands what it is for, but I can't be sure. But it isn't going to happen if I don't try, right?? Wishing you continued success!!

     
    Old 03-28-2001, 05:43 AM   #5
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    Thanks for getting back to me. My son sounds more and more like your son. I don't call it lazy though but smart. He figured out if someone else will do it for him why should he? I believe he understands everything I say to him, but like you I have always did everything for him, so he takes advantage when he can. He has gotten much better about following directions in I would say the last year or so. He will go get his coat, a pullup etc... He also loves the bath. I can't keep him out of the water in the summer time. He has been on a modified ABA program this year. Last year they tried a strict program, but he didn't do real well with it so now we do a little bit looser for him. If I were you I would try and contact a private special needs school, they may be able to guide you to a qualified therapist. It is never too late to try any technique that will help your son. Also if you want to get him to do things it will take lots of patience. I taught my son to pick up things by first asking, then showing him what I meant. I probably did this more than a million times before he caught on to what I wanted. The point though is he does know, and I suspect so does your son. I know of some therapists in Maryland who might be able to help you find an ABA therapist. If you would like any information please don't hesitate to ask. I wish you and your son the best. Remember to keep smiling even though sometimes it is a big challenge.

     
    Old 03-28-2001, 05:20 PM   #6
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    I feel horrible that you posted looking for help with your son and all I've done is pump you for information Yes, our little guys sound very familiar. I commend you on your consistency. For a long time (until he was 5) it was just Keith and I. His father and I separated when he was 7 mo. old and divorced when he was 14 mo. I did make him lazy. I guess out of guilt, being overprotective, whatever, I just did everything for him. Oddly enough, most of Keith's progress has been in the last year too. I am VERY interested in anything you can tell me about your son's ABA therapy. I.E. How many hours a day/week? Who pays for it? Is it done while he's at school? Or at home? What are some of the 'exercises' they do with him? Which have you found to be most beneficial? I would definately be very interested in knowing if your son's ABA therapist knows anyone in this area that does the therapy. The best we've done so far is 2 hours away. I'm still searching for someone local, but I really don't know where to begin. I feel like this is the best chance Keith has to at least form some type of communication skills. I know what he wants because if he's hungry he stands in the kitchen, opens cabinets, etc. but he has never uttered the first word. Thank you so much for all of the information you have shared with me and for taking the time to read my LONG posts One more thing I wanted to mention, you said that your son was loving...that is exactly how I would describe Keith if I had to use ONE word. I read that and knew they were just alike. Thanks for everything! Still hoping the potty training is coming along well. Take Care!!

     
    Old 03-29-2001, 05:02 AM   #7
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    Well first of all please do not feel horrible, I couldn't be happier to have made a friend that understands everything I am talking about when I talk about my son. I have a great support system don't get me wrong, but they don't understand. You are not going to believe this but I left my son's father when he was 4 months old and we are divorced too. His dad doesn't really have a whole lot to do with him, but is doing better than he was. As far as the ABA therapy goes we do a variation of it probably 10 to 15 times a day. I can give you a brief description of it, but still recommend you see someone who can set it up for you precisely. The most important thing to remember is to be consistant with this. We started with simple commands like "look at me", "give to me", "raise your hand". The premise is to repeat each one of these commands in 10 sets. You need to reward your son when he does as you ask. We used a toy that my son loved and the only time he got to play with it is when he did these trials. I know I am probably not explaining this as well as I could but hopefully you'll get the gist of it. I was curious if your son plays with toys the way they are supposed to be? Mine just started to. He now can push a little car around and he has a doll that he loves to hold and cuddle. I will see what information can find out for you. What area are you in? By the way the potty training is going really well, all things considered. I feel bad because it seems all we do in evening any more is sit on the potty. He is beginning to realize though that if he will go I will let him get up. Let's hope he catches on soon. Thanks for writing back,and for all your nice words.

     
    Old 03-29-2001, 11:54 AM   #8
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    That is so funny. My son will go No. 2 but still does No. 1 in his pull up at times. That's why we spend so much time on the potty. He is doing great with No.2, but then that's because I know when he is getting ready to and make him sit. Thanks for the words of encouragement. I appreciate it.

     
    Old 03-30-2001, 05:07 PM   #9
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    Thanks for your info. The reason I am asking about ABA is because Keith's speech therapist that he sees outside of school is going to start seeing him 4 times a week just for the summer and she and I were going to try to 'introduce' Keith to small doses of ABA to see how he does. It is so weird to read about your son and others on here who are so much alike. Keith loves McD's too and would live on their chicken nuggets if he could. He does play with a few toys appropriately, but mostly likes anything that spins, which we try to discourage. He also LOVES paper. He can seek it out like he has a radar. He just likes to rip it up and flap it. LOVES the summertime. Warm weather. Water. Dirt. He'd rather take a bubble bath than eat sometimes I think. I have tried to catch Keith doing #2 and put him on the potty, but he doesn't like it too much. I am going to get a seat with rails like you said you got for your son and see if that helps. He's too big for a little potty and the big one scares him. Wish me luck! I was wondering how long your little guy has watched TV. Keith just started for the first time in almost 9 years to watch Barney. My little girl loves Barney, so she watches 3-4 videos a day and Keith will sit and watch it the whole time, but didn't start until maybe 4-5 months ago. I was wondering if that was a good thing or not. I am taking him to a psychologist this coming Wednesday and thought I would ask her. I also was wondering how your little guy likes haircuts, teeth brushings, etc. I was reading one mom's post about how angry her son gets when he gets hungry and that also describes Keith to a tee. It can get pretty ugly sometimes. He's not easy to calm down once he's aggitated. I have just tried to avoid that situation by not letting him get THAT hungry, but it still happens and he still gets mad. You mentioned a special diet you have your son on and said you don't give him dairy products. Is that all you've cut out of his diet? You said it has helped. Just wondering. I swear the more I read the more I am very curious as to whether or not he's got autism because of the TS or whether it might be something else. I've always felt like what has happened to Keith was that he was put on phenobarbital at the age of 6 months for seizures and IMMEDIATELY became a zombie. Trusting what the doctors told me, I left him on it for a year and a half. He went from being a normal, typically developing child to being a zombie almost overnight. All around the same time he had immunizations and he was on his first dose or antibiotics ever. He doesn't have any kind of digestive/bowel problems. I don't know. All I know is that I feel like there is a little kid in him just bursting to get out. His aggression is becoming more of a fear of mine although it is only when he gets hungry and maybe a few other things, but when he is angry...he's angry. I appreciate all of the help you have been. I am like you, my family is wonderful, but they just can't understand what it is like to be in our shoes. Hope potty training is coming along! Take care!!

     
    Old 04-03-2001, 06:35 AM   #10
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    I feel the same way you do about the autism.
    Jt was developing fine until he had his MMR vaccination. He had already began to talk and was into everything. He had never been sick other than a cold. After he got the shot, he began getting ear infections and he just totally tuned out of the world. It has been a long road but he is finally coming back. He still has his moments of zoning out, but he much easier to get back now. He is just beginning to watch TV again and I think if Keith wants to watch Barney or anything else for that matter it is a wonderful thing. Jt loves anything with action on tv. Typical man that he is he loves to watch sports the most. I wanted to relay to you too, that if your speech therapist is willing to do ABA with Keith, she should try to get a hold of Kennedy Kreiger Institute here in Maryland and talk to Lynne Medley. Maybe that way she could at least get some information on how to do it. I don't have the number for Kennedy Kreiger right at the moment but I will try to find it for you. I have to go for now, but as always I am glad to have heard from you. I hope your appointment on Wednesday goes well. Let me know how you and Keith make out. Take care.

     
    Old 04-03-2001, 08:03 AM   #11
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    I wanted to add something to my reply to you because I didn't answer your question about Jt's diet and digestion problems. Up until about a year and half ago, he had never had a bowel movement with a formed stool. (I can't believe the things I talk about ha!ha!) He has had 3 secretin injections and for the past year has been taking his secretin orally. Since he started the secretin, he has not had as many problems with his bowels, but since we had eliminated milk, it has greatly improved and he seems much calmer. I wish I knew for sure what caused autism. It just seems to me from all that I have read, that it has to be somehow related to digestive system as well. Any way sorry to go on and on, but I wanted to make sure I answered that question. Also Jt is alot like Keith in that he loves the dirt, and paper. Jt likes to flap it and tear it. He also loves weeds or tall grass. He can't wait until he can go outside and play again. Hope all is going well for you and Keith. Talk to you soon.

     
    Old 04-05-2001, 08:04 AM   #12
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    We took Keith to Knoxville for his psych eval yesterday. The doctor confimed his autism diagnosis, but said it was due to his TS. She had some very discouraging things to say, but in the almost 9 years I have been dealing with this, I have learned to follow my heart and not the "professional's" advice. She said that since he was so old that he probably would not benefit from the ABA therapy much, if any. I don't agree with her, although I know that the therapy is less effective on him since he is older. Makes me very angry that NO ONE has ever even mentioned autism to me..I have tried and tried to get someone to listen to me that I feel he's more autistic than mentally retarded. Not until I finally saw an article that linked TS with Autism did I finally realize that I was right, now that it is so late in the game. I was also told that every child that is autistic has some degree of mental retardation. (thought you guys would LOVE that one!) And, she said that it has nothing to do with the stomach, the diets don't work, and it is a 'brain' disorder. She gave me a link to a website that supposedly proves that Secretin doesn't work either. So, I left with the feeling that this is what I am stuck with and there's no hope. She also didn't agree with me that Keith went from a normal 'typically' developing baby at 6 months old to a total zombie after his first dose of phenobarb.(for seizures at 6 mo) She blames his 'zombie' state on the infantile spasms. He had them for a month before he was diagnosed and didn't regress at all. I have home video showing the significant change in Keith overnight. I also told her that I read online (on here) that phenobarb was the only known anti-convulsant to cause brain damage. She blew that theory off too, once again blaming the infantile spasms. Even after I explained to her that the medication didn't make them any less frequent than before he started taking it. We were lucky in the aspect that he didn't have but maybe a few clusters of them a day- whereas some kids have them constantly 24/7. His neurologist was even very optimistic that he was going to be fine.."As long as he is not having a seizure, he can learn". I am basically very discouraged right now. It will take me a day or two to get back on track, but I will. Like so many other people here, I would be willing to bet if Keith were her grand-son she would have a whole different approach to his treatment. Sorry to ramble on for so long (I am good at that). Take Care!

     
    Old 04-05-2001, 10:12 AM   #13
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    I am so sorry to hear how that doctor made you feel. You should get Keith ABA, and see how it goes. Just because they say it doesn't really help older children doesn't mean anything. As far as every autistic child being a little retarded, that is just a crock. Please try to keep your spirits high. From what you have said about Keith, I know he can learn and all you have to do is keep trying with him. The ABA method is really good at reinforcing good behaviors. And because it is so repetive, it seems to really work. Jt didn't start it until he was 6. He is doing so much better it is amazing. Trust your instincts. I would think that you know Keith better than anyone. I am fortunate to have a doctor who understands this. Please know that I will keep you and Keith in my prayers and that I hope you can find someone to do the ABA with him. If you need anything please don't hesitate to let me know. Take care of yourself and let me know how you are doing.

     
    Old 04-05-2001, 09:35 PM   #14
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    Hello! WOW.. I just found this board and am amazed at how your sons sound like mine! Jake is 8 and is also non-verbal. We are also trying to potty-train him. As for his digestive system, his is screwed up too. He is lactose intollerant, and frequently is constipated. He loves Thomas the Tank, and Theodore Tugboat, Teletubbies, Pooh and Sesame Street. We also don't let him spin, or play with spinning toys (a doc said it could make him regress) He does seem to fully understand stuff.. (sometimes just lazy or stubborn!)He can understand simple directions (when he wants to!) He amazes us with his keen sense of "radar" .. can find books that we have hidden,,or his favorite: playing cards, a level (like carpenters use) , or his thomas the tank blanket. I swear it is a sixth sense!But, if he has to give it up (like to get in the car, on the bus,, etc.) he has a meltdown- that is why we tend to hide them. He loves letters and numbers. In school he is in a regular classroom, but has an aide. She is awesome. She has really helped him learn to express himself. He uses a book with cards velcro'ed on to tell what he wants to do, or what he is supposed to do. IE:a picture of a crayon to pick when its time to color.. or a toilet. We started pottytraining a year ago, with underwear and plastic pants: disaster. We all just became frustrated. Now he is in diapers again, but pulls them down to use the toilet. He sits down to pee. (last year we had him stand) -he was at a different school in different town last year. He succeeds more at school than home, but that may be because we have 3 other kids..which makes it hard. It is great to hear that there are other people who have a child like mine! By the way,, Jake is my stepson. I married his dad last year (he raised him for 7 yrs alone!) Jakes mom and dad got divorced when he was one, she wanted single life again,and has only called a few times in 7 yrs. sad..Anyway.. I love him, and my 3 kids do too. So, this is all kind of new to me! I am so glad to find others who know what I am feeling and from reading your posts.. I already have learned some helpful stuff! Anything else I should know that can help with raising an autistic child? thanks so much!

     
    Old 04-06-2001, 04:58 AM   #15
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    Jake is a lucky boy to have you and his father. Tell me more about him. You said he was in a regular classroom with an aide. I think that is great. My son has been in a special class since he was 2 and 1/2. He just started a school this year that is for disabled children only. I wish I would have gotten him into this school even earlier. He has made such progress since being there. My little guy is a pistol about spinning things too. We use those types of toys as reinforcers when we are working on new drills with him. That is the only time he is allowed to play with them. It is so funny how hard he will work for the opportunity to play with that toy. He also has a thing about strings or anything that remotely resembles a string. He has a rubber snake that he loves too. We use that for drills too. He becomes to obsessed otherwise. My son's digestive problems are also doing better. Unlike Jake, Jt's problem with his bowels was just the opposite. Since eliminating dairy from his diet though he is doing much better. I was curious, does Jake play with your other kids? My son does play with other kids, but not always appropiately. Anyway I am glad you wrote. I hope I hear from you again.

     
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