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 wanderbaby
Joined: 9/4/2006
Msg: 337
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Autism ParentsPage 15 of 19    (1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19)
Hi, my nephew is autistic, I'd say in the severe level, he's 6. He goes through phases of different kind of stemming: he's very fascinated with ropes/strings, pretty much anything he can manipulate and put into loops, then he had a phase of throwing things on the floor to make loud sounds, then to screaming/screaching which he's doing now. He has classes at home and he will be in 1st grade special ed that's focused on just having autistic kids. His school at home, the teachers/supervisor, they don't know how to prevent the screaming/screaching. So I was wondering if anyone has gone through this with their child or know anyone who has gone thru it and what worked ot help at least minimize the screaming/screaching.
 wanderbaby
Joined: 9/4/2006
Msg: 339
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Autism Parents
Posted: 8/10/2007 3:58:31 PM
I see your point, and sometimes he does it for attention, when he doesnt' get what he wants, but for the most part he does it because he's stems from it (somehow he gets stimulation when he is screaming, reason why I say he's stemming because he didn't do this til after he was going thru a phase of throwing things, when that was gone, the screaming occured) they've tried food intolerance, foods he don't eat, but the foods he won't eat he now eats and he laughs when they give him the food so they can't force him to eat it. I don't know about other autistic kids but my nephew likes to do things repetitiously and in a pattern. He has improved tho, because before he screamed a lot and now it's just sometimes. When he doesn't have class during the weekend, he screams more.
 mimom29
Joined: 11/5/2006
Msg: 343
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Autism Parents
Posted: 8/20/2007 10:03:47 AM
I know just how you feel. I have a six year old girl that was diagnosed with autism last august. we are coming up to our one year. Before last year she could barley speak 10 words. Now through hard work, and some excellent teachers that took their time, she can almost talk she is still way behind but it's not as bad as it was. I find it hard because all my friends with kids, don't have this problem. When they look at my duaghter they see a normal kid, just out of control and that is not the case. As I am sure you all know. She was also diagnosed with ADHD, and possiable bi polar.

It's hard being a single mom of any child but then you add a disablity to it, and it's darn near impossible to find that special someone who wants to take all that on too. I am still trying to find out all that she can qulify for since being disabled, just not sure where to look at. Any advice.
 wanderbaby
Joined: 9/4/2006
Msg: 345
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Autism Parents
Posted: 11/2/2007 3:49:18 PM
Sounds like he's going thru a phase, it could be his way of acting out stress since the environment has changed. since he bites/swears, give him foods that he can't tolerate. My nephew at one time screamed a lot, we gave him foods that he can't stand, and that has helped a lot. Does he have an aide with him at school? i forgot to look if ur in the states or not, but try to ask the school if they can provide an aide to go with him to school so he gets more one on one. It sounds like the biting/pitching is to get attention. does he do this at home too? He's using that as stemming as well so you need to redirect him to do programs to keep him occupied. I'd try the food intolerance, but you need to keep it consistent to make it effective.
 northernladyinsouth
Joined: 12/18/2008
Msg: 353
Autism Parents
Posted: 1/26/2009 9:13:47 AM
I have a son that has been affected since birth, but it took 9 yrs to get him diagnosed accurately. It was a very frustrating time in my life because I knew my child, and that there was more to it than what the doctors were saying. The doctors acted as if they knew my child better than I did and didn't want to listen to me (being about the sole caretaker of this child). I finally did find a doctor that valued my input and he diagnosed my son correctly. He has Asperger's plus about 4 or 5 other "labels". I turned to homeschooling him. It became my mission to help that child succeed, whatever that took. I did medicate him for a period of time, for different "labels", but in the long run decided that he had to learn to function without the chemicals. It has not been easy in any way...I will not tell you it has. I never had any support from the other parent, even though he lived under the same roof as us...(That may be where the autism gene came from) It was and still continues to be a rough life. Other people don't understand why you can't leave your 15 yr old in charge of the younger 2 to go out. He is 15 and appears very normal, but in reality, he is not completely normal. I do wait until I get to know a man...and see if there really is an interest for long term....before I get into the aspects of my son. I feel as if I have handled this situation on my own for nearly 16 yrs. and I am really not asking a man to come take over, or even help with him...except to be a good male role model. I can find the help offered by professionals on my own, but I can't provide a male role model under my own power...lol
BTW....for those of you with younger AS kids.....There is hope! I have had so many comments from professionals and people in general that they had no idea that mine is an AS kid. It takes many years of diligent work, but it's worth it!
 tabernouche
Joined: 6/5/2008
Msg: 355
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Autism Parents
Posted: 1/27/2009 3:34:00 PM
hi , my daughter doesn't have autism..though she does have sleep problems..i can't get her to sleep sometimes before 1100 on school nites and she's just six..could you send me to where i could learn about the diet your son is on that allows him to sleep through the nite...? ps my friend has autistic kids , so i was just reading this until i came upon yours and thought maybe it's worth a try..thanks Caroline
 wanderbaby
Joined: 9/4/2006
Msg: 360
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Autism Parents
Posted: 1/29/2009 4:19:33 PM
tabernacle, how long has she had this pattern to sleep that late? does she watch tv? eat any chocolate prior to sleep?

if she's have had a long habit of going to sleep late, over period of time, that becomes a habit hard to break. If she watches tv, turn it off an hour before bed. Maybe after taking a bath, let it limit to doing something that less stimulates the brain to keep it active. Watching tv at night isn't effective, it keeps the brain/body stimulating as well as wanting to stay up later due to wanting to watch the next episode or show. Take the tv out of the room and see if that makes a difference.

lessen the sugar intake after dinner, if it's food or drink take it away.

there's a natural supplement called Melonin that makes you sleep sooner than later. but over period of time the effect doesn't stay that long since the body gets immune to it. I would try taking away anything stimulatory to see if that's effective then taking any supplements or medication.

---

On that side note, my nephew's doctor suggested him taking some natural supplement that helps increase vocabulary, more receptive to hearing, and more attentive, we are hoping it will be effective in his speech and hearing. He is low functioning, doesn't talk unless it's one syllable. It's an effort to get him to talk. So cross your fingers and hope it works. I'll let you guys know if you guys are interested in researching it and such.
 VivaciousVixen2010
Joined: 7/12/2008
Msg: 362
Autism Parents
Posted: 7/16/2009 5:22:49 PM
my children don't have a father. my six year old son is autistic. he is a challenge. men don't want into the situation. it is overwhelming. i am a 24/7 mommy without a break.
i am beginning to give up on the though of getting married and actually finding somebody.
my focus is my children. the men that i meet are selfish. has anybody gotten to the point of quitting on finding your other half?
somebody who actually cares?
 WomanofWhimzy
Joined: 11/20/2008
Msg: 368
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Autism Parents
Posted: 7/20/2009 6:19:42 PM
I never look in the forums but decided to do so tonight. I am so glad I did. I too am a single/only parent with an almost 9 year old gifted daughter and a 7 year old Asperger's/ADHD son for whom I have spent almost 5 years seeking answers to things/behaviors that I knew were not 'right'. I am just now beginning to get real answers.

On the dating front- well..
It feels damn near impossible to believe that a man would be ok with stepping into my world with all that it entails. I read another post where a mom mentioned that she is a full-time mom with no break- I SO relate. I personally would be happy to meet a single father be it of a special needs child or not simply for the understanding from another parent.

I think this forum, whether or not it is a dating thing or not is a wonderful thing because as those of us with a special needs/ exceptional child know you often do feel alone. I hope that the parents who have already posted continue to do so and I will be checking back to see what is happening with others because it really does bring a sense of comfort knowing that other parents have experienced similar issues and may have some great advice for the rest of us.

Kristen~
 WomanofWhimzy
Joined: 11/20/2008
Msg: 369
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Autism Parents
Posted: 7/20/2009 6:28:38 PM
Hi.. your post touched me and yes, I have just about given up too on finding someone, a partner to share the road with. I don;t need a man in my life but I do miss those times when I could lean a little and have a shower without being 'on' to listen for the yelling, upset and potential trouble. I have dated. I am very hard to date though. I don;t have a lot of babysitting options ( another issue for the single parent of a special needs child) you cannot just have anyone watch your child afterall. The men don;t want the responsibility although i haven't asked anyone to take it on in the first place. As far as somebody who actually cares, well, I have found that even my closest circle has started to unravel so it does make one wonder how it is possible to have a close and loving relationship with anyone other than possibly a man who also has forst hand knowledge and hands on experience with a similar type of child.

I just wanted to acknowledge your post.

Kristen~
 WomanofWhimzy
Joined: 11/20/2008
Msg: 370
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Autism Parents
Posted: 7/20/2009 6:34:56 PM
My last post was specific to Vivacious Vixen.. I did not realize it would not attach to her posting.. can you say newbie!
 big pacific
Joined: 7/2/2009
Msg: 381
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Autism Parents
Posted: 10/8/2009 7:49:07 AM

Anyone else read about the studies that show the incidence of autism is getting closer to 1 in 100 rather than the currently accepted 1 in 150?


Yup, but that is for an "autism spectrum disorder", they keep adding things to the list so the numbers go up.
 gjay1
Joined: 6/1/2007
Msg: 382
Autism Parents
Posted: 10/8/2009 1:28:48 PM

Yup, but that is for an "autism spectrum disorder",

yes, and autism spectrum disorder, simply refers to any person on the spectrum, anywhere from profoundly autistic to aspergers, that definition has been around for many years now, so the numbers quoted are probably pretty accurate.
about the only difference is probably better diagnosis of kids with aspergers, but fortunately this has been the case for a fair while now.
the waiting list at work just grows, despite increased staff and services
 VivaciousVixen2010
Joined: 7/12/2008
Msg: 394
Agression
Posted: 12/20/2009 2:54:05 PM
what medications are recommended for uncontrolled autistic outbursts
 VivaciousVixen2010
Joined: 7/12/2008
Msg: 397
Autism Parents
Posted: 12/23/2009 12:42:00 PM
i have belonged to autistic groups where the children are more "a danger to themselves and others". where parents can't get out of the house and we correspond on the tele and online.
my son is on the wrong meds. i have spoken with quite a few parents and they have told me to get the right doctors and to get the help that is needed i will probably have to baker act him. My son needs to get under some form of control.
He is in a lockdown school. there is really nothing more that i can do for him at the point.
i have contacted the supervisor at the local DCF off ice and the school principal about this.
There are ongoing problems. I have to address them head on as his mother so that he can snap out of this and get better.

sometimes, cradling, doesn't work when a child is imbalanced and needs more work; a psychiatrist, the right toddy of meds and an in home behavioral specialist. I can't do it alone. I am not sending him to a residential home. He has a family. The supervisor of child protective said to me that i have been my son's strongest advocate. I have. I have faught tooth and nail to get him the help that he needs so that he does not fall backwards. I want to ensure his growth in all areas of his life. IT IS A VERY HARD LIFE FOR ME. He has the maturity level of a 2 year old and he is going to be 7. He can read on the level of a 3rd grader. Autism sucks. I wish that his life was easier.
 siks6
Joined: 12/20/2011
Msg: 404
Autism Parents
Posted: 12/30/2011 10:26:56 AM
I have an almost 6 year old boy on the spectrum. For me its extremely hard to go out, make new friends, date etc. I literally can't leave him at all or he will freak out. He also is extremely protective, if I shook someone's hand or a hug from a family member, he gets very aggressive towards that person. I think that has more to do with jealousy then anything though, I am his, and belong to him so he sees the other person as a threat. He cries his eyes out every single day when I drop him off at school, then rampages when I leave. Other then that, could be an attachment disorder. hasn't been confirmed.
 semicivilized
Joined: 11/10/2011
Msg: 406
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Autism Parents
Posted: 1/3/2012 9:56:48 PM
My son was diagnosed with autism a few years back. Luckily it was caught early.
The biggest frustration with him is trying to get him to eat something besides chicken nuggets at dinner time. Luckily he loves fruit! But french fries and chicken nuggets. It isn't the taste so much as the texture of the food that sets him off.

He is very high functioning. At five years old he talks and makes sentences and can usually tell you what he wants. Echolocation is a big one with John. He repeats what you say or gives you an answer without really hearing or understanding what you might be saying.

His meltdowns usually come from being tired. I remember hearing a story from his mom how he pitched a fit at the mall when she tried to get him into Lane Bryant. "You wanna go home?" He shouted back "Go home now!" Cant say I blame him. I hate shopping for clothes too.

My favorite story to tell about him is this. One day I woke up at about five in the morning to find my little guy watching Elmo on tv with an empty pie tin at his feet. Chunks of apple pie were on the carpet the tv and the counter. Not only did he grab it off the counter (he was two at the time) he took it to the living room and found sesame street on the tv. That was one mess I didn't complain about cleaning up.

The little guy does very well. The things that always get him are open doors, cabinets, or windows. He loves lights and watching the fans. Give him a ball and nothing else matters.
His favorite movie is Finding Nemo. He may be autistic but he knows EXACTLY what it means in the scene where Marlin and Nemo get together towards the end of the movie.

And like all boys he loves to roughhouse :D:D:D...
 siks6
Joined: 12/20/2011
Msg: 411
Autism Parents
Posted: 1/8/2012 7:45:50 AM
Echolocation is a big one with John.

Echolocation? LOL! That's what bat's have to find their way because they are blind, they use sonic waves. I believe the word you where looking for is "Echolalia". My boy has the same thing. When you talk to him, he repeats some of the words you say and mimics you. It's quite common.
 americanhoney00
Joined: 1/12/2012
Msg: 412
Autism Parents
Posted: 1/15/2012 9:34:43 AM
this is a great idea.i have thought of doing the same thing myself.. i have 4 children, my youngest son has autism. but i just might have to look into this :)
 sweeeetiepie23
Joined: 5/22/2011
Msg: 416
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Autism Parents
Posted: 9/30/2012 7:44:21 PM
Hi I am a single mom with two kids with special needs both diagnosed with Autism, I am divorced and the hardest part of the dating scene is trying to find a nice decent guy on here or anywhere who will accept my kids and I. I am not looking to be just another "fix" or notch as my kids don't need that, I want to find someone who will understand my kids and I.
 singer77
Joined: 10/29/2005
Msg: 417
Autism Parents
Posted: 10/1/2012 11:01:13 PM
I am a single mother to a 6 year old Autistic Girl. We have been on the waiting list for a couple of years now for her tests to be done... it annoys me that I have to come up with $1680 for someone to tell me something I have known for 4 - 5yrs now and figured out what I am meant to do to make her life better. I am only getting the tests done so she can have an aid at school, not that she is that bad anyway but I do not trust that the teachers won't just let her sit at the back of the class and forget she is there.

I have spent 4 years researching Autism, foods and medications. I do not believe in medicating and over the next year (as money permits) I plan to finish a book with my own recipies for my daughter. She is 6 yrs old, never had lollies, a burger, a chocolate besides a Kinder Surprise, but will eat any cake or biscuit I put in front of her.
All the cakes ect I make are gluten free, sugar free and yeast free.

Im so thankful she came to me :) Autistic children are so beautiful and just love the world :) I wish more people were like them. I can honestly say nothing bad about my life with her, watching the food I give her, she is such a calm and quiet person, yet when she has something to say it just blows me away lol

I have stayed single since having her pretty much, I do not know how someone is going to react to being told 'oh and I have an Autistic Child'... people act like its a disease, and I hate it when people say 'oh im so sorry' ... why are you sorry? I don't say hey im sorry your child is a mean bully or im sorry your children grew up to be bludgers lol

Oh well thats my rant, that felt good, enjoyed the thread, thanks for starting it :)
 rdcnorm
Joined: 3/7/2007
Msg: 418
Autism Parents
Posted: 10/6/2012 12:21:03 PM
DON'T MOURN FOR US by Jim Sinclair

[This article was published in the "Our Voice," the newsletter of Autism Network International, Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the same time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Reprint permission: All articles published in "Our Voice" may be freely copied and shared for personal use, and reprinted in other publications, provided the original author and publication credits are included in all copies or reprints. If you reprint any of my articles, I would appreciate being sent a copy of the publication containing my article. My mailing address is:

Jim Sinclair P.O. Box 35448 Syracuse, NY 13235
 Noriboricua
Joined: 2/23/2010
Msg: 419
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History
Autism Parents
Posted: 8/15/2013 12:18:03 PM
How can I join this group?
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