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Old 10-19-2008, 06:15 AM   #1
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Finding balance parenting a spectrum child

I was wondering/looking for advice. I feel soooooo overdosed on autism and aspergers and the books,therapies, IEP's etc. I do this alone although my son's father is around but only in the sense of the word he doesn't participate at all in all of this as he is probably on the spectrum somewhere and never diagnosed. I was just wondering how the parents out there take the time for themselves in this busy routine that is autism and put the breaks on for a day and just be themselves. I've found myself without friends and family memebers are no where to be found, a babysitter you must be kidding me. It's like being behind glass and no matter how hard you pund no ones sees or hears you. I seem to remember a thousand years ago that I use to have a life and was pretty well liked with a great sense of humor I'd like to be that person again at least every once in a while. How do all of you do it?

 
Old 10-19-2008, 12:18 PM   #2
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Re: Finding balance parenting a spectrum child

Quote:
Originally Posted by Liamsmom View Post
I was wondering/looking for advice. I feel soooooo overdosed on autism and aspergers and the books,therapies, IEP's etc. I do this alone although my son's father is around but only in the sense of the word he doesn't participate at all in all of this as he is probably on the spectrum somewhere and never diagnosed. I was just wondering how the parents out there take the time for themselves in this busy routine that is autism and put the breaks on for a day and just be themselves. I've found myself without friends and family memebers are no where to be found, a babysitter you must be kidding me. It's like being behind glass and no matter how hard you pund no ones sees or hears you. I seem to remember a thousand years ago that I use to have a life and was pretty well liked with a great sense of humor I'd like to be that person again at least every once in a while. How do all of you do it?

Honestly, you have to just take a step back. Autism doesn't have to run your life. My son was diagnosed 2 years ago, and sure I read some books, have posted in the forums, talked with other parent, attended some classes, etc.. But I did not overdo it. I may still sometimes talk about it too much when something is happening with my son- bad week at school, diet issues, whatever.. but for the most part, I don't spend every waking moment thinking about Autism. Sometimes I even "forget".

My Aunt turned a part of her house into a therapy/school room for her son. He's got all kinds of sensory equipment in there, as well as everything he needs for various forms of therapy. When he's not in the classroom, he's at home learning or doing something specifically related to his Autism. She's up late with him, and up early with him. I told myself I cannot have that kind of life. It's too much!!

My son needs to be a kid, and I need to be me. Both of my kids have to go to their rooms for 2 hours a day. Either to nap or to play quietly. They know this is MY time (as well as theirs). They go to bed at 8, and I get two hours (on a good night) to relax before I go to bed. When they're in school (my son is in special preschool), I do grocery shopping by myself, or treat myself to a coffee. You really do have to (learn to) appreciate the little time you get here and there.

My husband is not as involved as I am, either. But if I need to get out of the house, he is always willing to watch the kids for me. And some days I REALLY need it. (I don't have friends either.. and not many people in my family can relate to me. So I understand where you're coming from there).

Best of luck to you

 
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Old 10-21-2008, 06:00 PM   #3
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Re: Finding balance parenting a spectrum child

My son is now almost 17. It does get draning and tiring. I go in cycles. I read as much as I can do as much as I can, worry always if I am doing enough, or did enough. Then there will be times I just take a break.

You just have to make yourself take a break from it all. I realize that is what I need to do. Even though it is always in the back of your mind, I have to take a step back and let things fall in place. It is easy to get wrapped up and overwhlemed in it all.

It is hard when it all falls on you. We just have to know we are all doing the best we know how.


 
Old 11-09-2008, 06:40 PM   #4
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Re: Finding balance parenting a spectrum child

Wow, I totally understand what you are going through. I also sometimes remember my life as it was before. I go through periods (like right now) where I feel like I can't handle it anymore. We have tried some of the therapies, but it is impossible to do them all. I also feel guilty, like I'm not doing enough for my boys even though their teachers and therapists always tell me what a great job I'm doing. I was never very social, but now I don't have any friends. When I get together with family, everyone wants to tell me about someone else's child who has autism or a tv show they saw about autism. I really need to work on getting balance in my life! Maybe tomorrow will be a better day

 
Old 11-16-2008, 06:09 AM   #5
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Re: Finding balance parenting a spectrum child

it seems that in most families the mom has to do most of it. The husbands just check out. they can't handle it for some reason.

A lot of the time the husband is working hard to make the money to pay for all the therapies, meds, etc. While mom is reading, going to the school, going to the docs, and the OTs, etc...someone has to do the therapy end of it.

It is usually the mom.

 
Old 11-17-2008, 08:53 AM   #6
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Re: Finding balance parenting a spectrum child

I went to a seminar last week by Geoff Evans -who's been working for over 30 years in autism - entitled 'Autism - what works'?I didn't feel like going - it started at 6.30 and went on till 9, my husband had to do the whole bed time thing on his own, I hadn't had any tea etc etc, however.... it was fantastic.

If you live in the UK and he comes to your area GO AND SEE HIM, you won't regret it. He talked about therapies etc and all the stuff out there, but the message he sent home big and loud was that the most important thing we do is 'be consistant' , which we,as parents, have probably all come to learn, and to work on the basics, bit by bit trying to encourage your child to ,for example as in my case, eat something other than chips.

He said that the work we do isn't going to hit the papers as a super new 'cure ' for autism, but it is what our children need. We're not trying to take the autism away, but help our child to find a way of living with it and trying to make small changes that will help him make a little more sense of our world.

Another great message was ' don't work on the child's weaknesses..work on his strengths'.
So ... you have bad days...don't beat yourself up, there isn't a text book on your child as he / she is an individual. Without us our children have much less chance of learning about the world - this means you need time for you too, don't feel guilty if you don't spend every minute of every day reading and searching for that magic therapy that will 'do the trick'.
Oh dear, this all sounds rather garbled, but it was very inspiring and uplifting.

Last edited by DannysMum; 11-17-2008 at 08:57 AM.

 
Old 12-26-2008, 08:47 PM   #7
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blessedmom HB User
Re: Finding balance parenting a spectrum child

Quote:
Originally Posted by Liamsmom View Post
I was wondering/looking for advice. I feel soooooo overdosed on autism and aspergers and the books,therapies, IEP's etc. I do this alone although my son's father is around but only in the sense of the word he doesn't participate at all in all of this as he is probably on the spectrum somewhere and never diagnosed. I was just wondering how the parents out there take the time for themselves in this busy routine that is autism and put the breaks on for a day and just be themselves. I've found myself without friends and family memebers are no where to be found, a babysitter you must be kidding me. It's like being behind glass and no matter how hard you pund no ones sees or hears you. I seem to remember a thousand years ago that I use to have a life and was pretty well liked with a great sense of humor I'd like to be that person again at least every once in a while. How do all of you do it?
I have the same problem. I get so overwhelmed sometimes I feel like walking out my house but I know I can't. I wish I knew cause there used to be respite care here with the military but that was taken away for retirees so now there is nothing. The easter seals will help and pay for a provider for your child so you can get some rest or whatever you need, but you have to find the provider yourself and that provider have to be CPR certified and registered with the easter seals. Hope this help even though I don't have it yet.

 
Old 12-26-2008, 10:09 PM   #8
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Re: Finding balance parenting a spectrum child

my sone is 15. He has had a diagnoses of an autistic specturm disorder since the age of 3 1/2. I am also a single mom. I remember the first 5 years of his diagnoses , those were the most difficult. It still can be when dealing with the school.
It does get easier though! I have gotten into the routine and know that my son is recieving the best services that he can right now helps. As long as your child's needs are being met and is in the right programs, has the support then it is easier to relax. It really is!
Also, Autism is a label. Just like many other lables out there to have to contend with. Try not to focus on the label of autism, or the stigma. What matters the most is the child, and his strengths. He is your son, your baby first abd forsmost. A boy or a girl that has more challenges to overcome. However, still a child, not autism. that is not your child.
I find it remarkable how many families lose site of this , and only focus on the label of autism, the parent, or parents need to move beyond the label. And focus on the child's needs and best interests.
As long as the child is getting the services and is thriving , then it is ok to put the brakes on, then your able to ficus on other things in life.

 
Old 01-01-2009, 09:59 AM   #9
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Re: Finding balance parenting a spectrum child

Quote:
Originally Posted by DannysMum View Post
I went to a seminar last week by Geoff Evans -who's been working for over 30 years in autism - entitled 'Autism - what works'?I didn't feel like going - it started at 6.30 and went on till 9, my husband had to do the whole bed time thing on his own, I hadn't had any tea etc etc, however.... it was fantastic.

If you live in the UK and he comes to your area GO AND SEE HIM, you won't regret it. He talked about therapies etc and all the stuff out there, but the message he sent home big and loud was that the most important thing we do is 'be consistant' , which we,as parents, have probably all come to learn, and to work on the basics, bit by bit trying to encourage your child to ,for example as in my case, eat something other than chips.

He said that the work we do isn't going to hit the papers as a super new 'cure ' for autism, but it is what our children need. We're not trying to take the autism away, but help our child to find a way of living with it and trying to make small changes that will help him make a little more sense of our world.

Another great message was ' don't work on the child's weaknesses..work on his strengths'.
So ... you have bad days...don't beat yourself up, there isn't a text book on your child as he / she is an individual. Without us our children have much less chance of learning about the world - this means you need time for you too, don't feel guilty if you don't spend every minute of every day reading and searching for that magic therapy that will 'do the trick'.
Oh dear, this all sounds rather garbled, but it was very inspiring and uplifting.
I feel the same way. My 2 year old son was diagnosed a week and a half ago, and there is so much conflicting information out there.

 
Old 01-01-2009, 10:01 AM   #10
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Re: Finding balance parenting a spectrum child

Quote:
Originally Posted by golfhat View Post
it seems that in most families the mom has to do most of it. The husbands just check out. they can't handle it for some reason.

A lot of the time the husband is working hard to make the money to pay for all the therapies, meds, etc. While mom is reading, going to the school, going to the docs, and the OTs, etc...someone has to do the therapy end of it.

It is usually the mom.
I'm a mother with a two year old son with autism, my husband has been "supportive", but I am doing all the research and making all the appointments, and so on.

 
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