O.K. I know this is going to sound bad

@lvmybz (125)
United States
March 12, 2007 2:55am CST
I love my son, he really brings such joy into my life. Both my boys do. Yet sometimes, my autistic son really gets to me. I feel horrible for having these feelings, like I should just love and accept him no matter what. Well of course I do, I would do anything for my kids. So I feel really guillty when he displays typical autistic behavior, I tend to get annoyed. And truth be told, sometimes I get mad. Lately he has been repeating phrases over and over. These phrases or sayings usually make no sense. He has a tendency to make up words. One phrase that he does say that I can understand, is "Don't spill the water." He really emphasizes the word don't, and he always says it excatly the same way. I feel really rotten, because usually I have to say "o.k. that is enough." My husband will say "leave him alone he is just playing", but after all day of the same phrase over and over I have lost my patience. In addition, I heard that you should just let an autistic child say whatever, and not to interfere. So am I causing him more harm by trying to stop it? I also heard it is called steming. Is there anybody else that is going through the same thing or something similiar? Hope to hear from you soon.
2 people like this
9 responses
@sylviekitty (2083)
• United States
12 Mar 07
Maybe I missed it in your post, but how old is your son? I'm currently taking a workshop called "More Than Words", which is for parents who have kids on the spectrum. It's for kids in all different stages of communication. And while I have also heard that it's not necessarily good to interfere when they are in their stimming behaviors, you don't want it to reach the point that it's keeping them from living a "normal" life. My son is 3 1/2, and he makes up words, does say some silly things over and over. And sometimes I wish he'd stop as well. Or like if you ask him to do something, he says "no, no, no, mommy!" (but might do what you want anyway). My husband gets upset because he's telling me no, but not realizing that he might just be expressing his feelings (in an improper way) that he isn't thrilled with what I'm asking him to do. My husband just keeps up my son's improper communication, IMO, when I say "just ignore it". Anyway.. One of the things I'm learning is that you want to teach your child to say what he would, if he could. So in other words, if he's screaming because he's upset, say something like "Andy's mad". or "I'm mad, mommy". Until he figures out that this is something he should be saying, instead of screaming. You want to model it in a way that is short, and easy- easy enough for him to say. It might take time, but he'll get there. Also, it's really ok to re-direct him. If he's saying something over and over, or maybe playing with a toy incorrectly, you can interrupt what he's doing and turn it into a game. Get him to say and do things more appropriately, by modeling things for him. In fun ways. :)
@lvmybz (125)
• United States
13 Mar 07
Hello Thank you for your response. My son is almost 4 1/2. I appreciate the good advice, that is a real good idea giving him the proper word to use instead of screaming. I also that I should stop the stimming before it interferes with his life. I have tried redirect him, sometimes it works and other times he just gets stuck. I think perhaps I need to be more creative and make it more fun just as you mentioned. Thanks again.
2 people like this
@rainbow (6763)
16 Mar 07
Sylvie as always you come up with amazing and easy ideas, I try this with Bong too, now he's 7 I don't ave to do it as often as he will tell me how he feels now even if he shouts it so this does work and can be made into a fun game sometimes too!
2 people like this
• Canada
4 Apr 07
The "More Than Words" Course is awesome and I feel necessary as it helped us with our son immensely when we took it almost two years ago. My Son will be 4 this summer and I get frustrated with him sometimes when he repeats "Mommy, Mommy, Mommy" and not really seeming to want me for anything. Then he will continuously say "Hi Mommy, Hi Daddy" over and over so we try to make a game out of that because you can't take everything away from them. He will also say non-sensical things over and over like "Digga, digga,digga" We just have to model and eventually they will catch on. My son has come a long way especially in the last six months or so! I wish you all the best in your challenges! :)
@rainbow (6763)
14 Mar 07
Sweetie, you are allowed to feel like this, sometimes Bong is so hard to love or even like, he squeals or makes stupid noises repeatedly for no apparant reason some days, his brother now copies the behaviour and they seem to do it together, it drives me crazy,almost until screaming point and then Shrek who expects me to deal with everything as he switches off and seems able to ignor anything and everything they do will say, "don't shout, you now it doesn't help" well it helps me, doesn't seem to cover it. Could you try to distract you son with someting else just before it drives you crazy so he doesn't realise you are controlling it, that someties works for me even pointing out ofthe window and shouting did you see that giant caterpillar/flying pig/pink elephant sometimes works just enough occasionally to give you a break.
2 people like this
@lvmybz (125)
• United States
15 Mar 07
Hello Rainbow Thank you for that, reading your post does make me feel better. Also, if you recording my place and then your's I am sure they would sound very familiar. I have tried distracting and it works for a moment, then he goes right back making noises or repeating phrases. I have almost completely taken gluten out of his diet, maybe now I wil get him off dairy. We shall see.
3 people like this
@rainbow (6763)
16 Mar 07
bless you, if you find a really good way to stop tis apart from headbutting the wall until you are unconscious and cannot hear, you must let me know, I'll be following this discussion in the hopes of getting some clues. Big hugs and ear plugs to you!
2 people like this
@clownfish (3277)
• United States
12 Mar 07
Hi! Oh, I totally understand! Before I knew what was going on with my daughter, I used to get frustrated and just not know what to do! My daughter has been diagnosed PDD-NOS and has sensory issues. It's the sensory issues that used to cause us so many problems. When she was a baby, she would just scream and kick and I had no idea what to do. I couldn't figure out why she was so upset. I would call my hubby or just try to step back and let her calm down. Now she's 4 and I know what's going on with her. Sometimes we still don't know what's upsetting her, but she gives us "cues" so that when we see those, we know she's having a bad day. My daughter will squint or scrunch up her face. When we see that, we know to be prepared! :-) It's perfectly normal for you to feel the way you do. Part of it is that you have to mourn for the life your son will not have - all the dreams you had for him may not come true. After you do that, you can accept the life he can achieve! One thing that really helped me was to read The Out Of Sync Child (I believe the author's name is Carol Stock Kranowitz). It's all about sensory input disorder. Although your son may not be having these issues, this book provides a lot of support for parents and taught me a lot, such as like as you stated, your child is not acting out to annoy or hurt you. Your child is trying to communicate, whether it be by repetitious phrases or through heartbreaking meltdowns. This book changed the way I saw my daughter's behaviour. Don't forget to take care of yourself, too! Take breaks, do special things for yourself, and use a respite care provider if you have one. I know none of use especially wants to be away from our children, but those breaks really do help! :-)
@lvmybz (125)
• United States
13 Mar 07
Hello Thank you so much for responding. I agree I do mourn for the life he cannot have. As with your daughter my son will act differently when he is about to have a melt down, and then we know what is comming. In addition, I will get the book "The out to Sync Child." Although my child doesn't seem to have any sensory issues, it still seems like a good book. Also taking breaks is a good idea, I just wish I had the displine to do it.
2 people like this
• United States
3 Apr 07
I second the comment about "The Out-Of-Sync Child." Another one that might be useful is "The Explosive Child" (I can't remember the author). It is primarily aimed at NT or ADD kids, rather than those on the spectrum, but it still has a lot of points that apply to ASD kids, and some tools to handle them. I'm a dad of an autistic 5 year old myself. My son is high functioning, and as such can make things even more difficult - He can articulate his feelings (with a little prompting...) and that makes it even more mystifying when he does something "autistic" (refuses to switch tasks, stop stimming, stop monologuing about what ever his favorite topic is at that time, whatever.)
@catcai (1057)
• Philippines
13 Mar 07
Give yourself a break- we all run out of patience sometimes. ANd it is normal for you to burst out- you're only human and you get frustrated too. Don't be too hard on yourself... I have an autistic brother, and sometimes, there are times that i wish that he was just normal- it really takes a great deal of patience. I think you should just let him talk- because its better at least he is able to verbalize- this is called echolalia, there are other autistics that couldnt even utter a single word- i think you can use this to further teach him to talk. There was a movie that i watched regarding a mother with 2 autistic sons- both of her sons excelled well in their respective splinter skills and i think have been a spokesperson for an autistic foundation of some sort-Have you tried seeking counsel from a professional in the field of special education? I think it would help you and your child a lot- and would at least decrease your frustrations too.
@lvmybz (125)
• United States
13 Mar 07
Hi Catcai Thank you, I know getting frustrating is normal, yet it is comforting to read other people know what I am going through. BTW what was the name of the movie? Once again, thanks.
2 people like this
@sutan74 (1113)
• Philippines
12 Mar 07
As parents we should be more patient and undestanding to our children especially the ones with developmental and psychological defects. Having an autistic child can be tiring and annoying but its not his fault he was born that way. If we as parents are impatient with our child, who would care for that child when you're gone. He is your responsibility and what you can give is love, care and support for your child to make him become accepted in society. Hope this helps a bit in what you are going through.
2 people like this
@lvmybz (125)
• United States
13 Mar 07
Hi sutan74 You are absolutely right we as parents need to be more patient with our children. I admitt I struggle with patience, yet it does not do any good to anybody espcially my child. Just out of courisity, do you have a child on the spectrum?
2 people like this
@deebomb (15322)
• United States
2 Apr 07
There is nothing wrong with you feeling frustration with your son. We parents that have so called normal behaving children get just as frustrated with them too. It part of being a parent. I remember wishing my kids would just disappear for a couple of hours or I could hang them in a closet for a while. It's ok to have the feeling .but how we react to those feelings that is important. While haveing the feelings we must still remain calm and under control. best of luck with your son.
@mobyfriend (1019)
• Netherlands
15 Mar 07
I have achild in the spectrum so all Ican say don't feel guilty. qThe special needs and behaviour of your child puts so much pressure on the parents that it is no wonder that one day we can cope better than another. Maybe there is a program where you can learn together with your son to control that behaviour. My son had a period when he repeated dirty words he heard from others. So I learnt him to say those words (since they have to come out one way or another) only in his room without someone else present. It took some time but in the end he outgrew that phase. And I've learnt that if one sort of behaviour disappears something else pops up just because they need some kind of behaviour to keep control over a situation. And any kind of stress can bring old behaviour back. And I hope you have some time off for yourself and that someone else can listen to your son for a while. This is in fact a great discussion because people from outside often don't get what autism is. You just can't explain to them how worn out you sometimes you can be. Thanks for letting us MyLotters know how parents really feel sometimes.
2 people like this
@be4kids (12)
• United States
6 Apr 07
Been there done that. These are perfectly normal feelings not only with autistic children but with the mainstream children as well. The repeating of the same phrase is called "echolayla" (don't think I spelled that right) this is one of the classic signs of autism. I used to work in a school as a secretary and I'm a mother of an autistic boy. I had a special education teacher explain this to me he said "think of the autistic mind like a file folder, the autistic child will here a keyword and he will run that through his file folder and when he matches that keyword once he finds that match he pulls up everything associated with that keyword and because it takes him so long to find that keyword phrase that they tend to stay with that word repeating it over and over." To me that made a lot of sence. My son is now 12 and we still battle over the constant repeating of the same word and I'll ask him are you stuck on that word and he'll tell me yes then he'll move on to a differant phrase.
@wiccania (3360)
• United States
13 Jun 07
my son does that, repeating things over and over. mostly stuff from his videos. usually i ask him to elaborate. for example today he kept saying "violet is a purpley-blue color" (it's from blues clues) so i've been saying "that's right, but what colors mix to make purple?" his behavior does occasionally get on my nerves too. so you're not alone. i try to be patient, but sometimes i just can't take it.