Marriage and autism

[graciela]

I remember going to one of those autism meeting, it was a lecture type of thing. They had general findings about autistic people and their familly. I remember them talking about a higher rate of divorce on families with children with autism.
Lately, I am started to feel isolated, I whan to share my feelings but at the same time, I have to be positive and strong for my familly. I feel very guilty and overwelmed sometimes, that I did too much of this? or, that I did too little of that? I also wonder about the future, if my son is going to be able to live normally or if he is going to be able to be independent.... I guess I think too much. Sadly, I noticed that the last thing in my mind has been my husband or my marriage. I notice that even though we do things with my son, we don't talk or go out like before. Please help......

[StrictNon-Confo]

If you think he has a problem with dealing with changes of a more ordinary nature now, think about how much more insanity will be caused if the changes around him involve a worsening marriage that might end in divorce!

The best thing you can do for all involved is to maintain an appropriate balance so you don't become too difficult to live with, either for him or your husband, or the rest of your family. It takes time to make time, and take time to be there. Your son needs the stability that can come from you and your husband having a happy marriage. If that means less time spent directly on him and his immediate needs, do so: it works to his advantage in the long run. Don't for a minute get the crazy idea that he won't pick up on things going awry in the marriage or family life!

[Lisa S]

Graciela,
Is there someone who can take care of your son for a couple of hours while you and your husband go to a movie or to dinner together? I think it is important to make time to spend as a couple away from the kids and work so you can remember what brought you together. I know it can be hard to find a sitter we feel we can trust to handle our kids, but it is important that we do.

Also if you want to talk about your worries, I think you will find we are safe people to talk to. We all have worries so we will not think less of you for having them. I think you should know that you did not hurt your son by anything you did or did not do. I don't know how independent he will be as he grows older, but you are doing everything you can to help him to become more independent. You have taught him to be potty trained and you will continue to teach him other things.
Lisa

[David Andrews]

I remember going to one of those autism meeting, it was a lecture type of thing. They had general findings about autistic people and their familly. I remember them talking about a higher rate of divorce on families with children with autism.


I dunno about just autistic kids' parents going through this at a higher incidence; I'd imagine that any child who ends up in a situation with special needs might be ending up coming to terms with his/her parents splitting. The strain on families when statutory services fail to do their job properly can be devastating... it' not the autism, or whatever needs the child has; it's that the people paid to help aren't helping. And that's what happened to me and my now ex-wife.


Lately, I am started to feel isolated, I whan to share my feelings but at the same time, I have to be positive and strong for my familly. I feel very guilty and overwelmed sometimes, that I did too much of this? or, that I did too little of that?


Do your best not to feel guilty. Nobody trains us for this job, and we are all expected to do it very well with no training... so, you don't need to feel guilty, because you have no reason to.


I also wonder about the future, if my son is going to be able to live normally or if he is going to be able to be independent....


AS for living "normally", I don't think so, but then I don't think many really live normally ;) But he can be helped to live a fulfilling life. I have a personal helper 5 hours a week. If I'd had that when I was married, I might still have been married now. And this person helps me with my organising my space and my time. And that helps me to be able to do my work and my studies. I'm one of few autistic psychologists in the world.


I guess I think too much. Sadly, I noticed that the last thing in my mind has been my husband or my marriage. I notice that even though we do things with my son, we don't talk or go out like before. Please help......


You may have hit it on the head there... it's important, sure, to think about your son's future, but you need to also think about your hubby and you. You may well be able to benfit from a bit of Rational Emotive Counselling... I have a notion that this type of problem (essentially what Karen Horney used to call "the Tyranny of the Shoulds"....) is maybe what REC was developed for.... basically, REC is RE(B)T used not for therapy purposes but for personal development purposes.

[Deester]

I can so relate to what your talking about. I think most of us can relate. There are good times and bad. The stress of raising a child with a disability can be overwhelming and the stress builds slowly over years to the point that if you don’t know how to deal with it, you may have health concerns for your family.

Consider talking to your doctor. He may put you on a low dose anti-depressant. If you knew how many of us out there are taking something to help you’d be surprised.

It’s important to talk to hubby if things are getting to be too much. I know how you feel you don’t want to bring your partner down but it’s so important to communicate to keep your relationship healthy.

As far as looking into the future. I’ve taken that train ride and it’s not nice. What I try to do is just think a few 1 or 2 years into the future. It’s too overwhelming for me to think will she be independent or not. Take baby steps. I try to think into the future financially to try to plan if she needs assistance but that’s it. It could really be hard on a mom’s vision of their kid’s future. I try not to go there, but it’s natural to think about it.

Some times I feel alone too. My husband has a severe sleep disorder and falls asleep often. At times I feel like a single mom. I have the added stress that when he is watching the children that he’ll fall asleep and they’ll get into ‘something’.

When all else fails have a good cry. We didn’t pick the situation that we have. We were given it for whatever reason. We are stronger that we think. Talk to friends, family and your friends here. We can all help you through this. Try to get a little extra sleep as that always helps when I’m down.

Long term, try to find out about agencies that can assist you with respite. Do you live in the US?


Denise

[graciela]

I really whan to thank everyone that responded, it feels so good to share the good and the bad timesand as has been said. Yes, I live in San Antonio tx. but I am from Mexico. I also just find out that they have agencies(any baby can) that have parenting counceling. Dave, can you explain me a little bit more about rational emotive councelling? I am interested in that...

[mlwear]

Ditto on everything written. My husband is a workaholic. Sometimes I wonder if he works such long hours so he doesn't have to deal with all of this.
Look for assistance anywhere and everywhere you can. Start with your local ASA chapter or ARC. Just ask them what they know of that is available. I vividly remember learning that there was help out there for me and literally crying from relief. I had always been a very independent person that never needed help. I was the one that helped everyone else. I am over that now, and take help however I can get it.
I can't remember specifics about your son. Is he young and does he sleep ok? When our family was new to the area and couldn't find a sitter, my husband and I would have "date night" after we got the kids in bed. We would dress up a bit. I would set the table with the china, flowers, candles. We would have a grown-up meal. It was quiet and we could reconnect. Even a late dessert would be nice. Just a block of time set aside for the two of you-- and hopefully the kids don't wake up. We have several sitters now, but still do that from time to time.
I think a lot of us here can relate to what you are writing about.

[graciela]

MLWEAR,
My son is five years old and he was diagnosed with HFA last year. He sleeps okay for the most part but I think that what worries me most is his transition from especial education to mainstream. He also goes to terapies twice a week (speech, OT, and ABA) wich is expensive and very crazy sometimes; tryint to arrange all the scheludes.
I whan to have a support group of people helping my son, especially now that he is going to be in a regular classroom. But sometimes, I really don't know anymore. You hear about some many forms of terapies and medications that you wonder what you should be doing....
About my husband, he is also a workaholic and that makes things very hard for me. Yes, sometimes I too feel like I am divorce...
I have to said that he is very resposible; he supported my desitions about Mario's(my son) terapies and doctors. I really love him for that.....

[mlwear]

My husband always supports my decisions, too. But, do you feel this way? I think he supports my decisions because that way he doesn't have to make any. He is only informed as much as what I tell him. He doesn't take any initiative to find things out. I don't want to make my husband sound like a bad guy. He isn't. He's sweet, loves our kids and will do anything that I ask, if possible (i.e. it doesn't interfere with work). One school form I had to fill out asked who is responsible for the majority of the parenting. I put down me. He didn't like it. He takes both of our boys to do all the fun stuff, but the tough stuff is on me. I'm being a whiner here, I guess. I know I have it a lot better than some. His hard workand that lets me stay home, which I think makes it easier to do things with my kids and work with the schools.
Regarding transition to mainstream/inclusion. This is my son's second year in Kindergarten. The first year he didn't have a good teacher and was in the self-contained classroom much of the day. This year he has great teachers and is in reg. ed. nearly 100%. It has been a bumpy road. He likes being in reg. ed. But, if he didn't have an aide helping him so much, he would be lost. In another thread I talk about problems with sensory diet. He often comes home from school and has tantrums and meltdowns. He is doing SO much better academically than he did in the self-contained classroom, though. The transition may be difficult, but I am a big believer that everything will be OK in the end. If it isn't OK, it isn't the end. Just keep your eyes open and intervene when you think it is needed. Always remember that when you are dealing with the school system that you are sort of playing a game. It seems like one where they are the ones that know the rules and the tricks. Be as educated as possible.
How do you find the TX school systems? I've spoken with a couple of people that have had difficulties. We lived in San Antonio years ago a couple of short times (military related) and I loved it. We had the chance to move there as civilians, but passed. My husband's company's HQ is in Plano, so there is always a chance we could end up there.

[graciela]

Yes MLWEAR, I do feel like that with my usband. He support my desitions but does no research or look for solution on it's oun. mmmmm..... I guess I am not alone.
About my son's school, I feel that they can do better. They don't offer him much; only speech and is not in one on one setings wich is just not enough! I was very frustated with them las month because they send me a letter explainig that he can not miss anymore school days (we take him to terapy twice a week). I was so mad I call for an ARD meeting. I told them that my son needed these terapies and that they were not giving them to him so he was geting them somewhere else! well, after I explain my case ( it was not a chort one) the prinsipal told me that she was going to see why I never receive a formal respond from the school about the doctor's OT terapy request. They also arrange the school-bus schelude so my son would be in time for his terapies and they changed his paper work so he would have no more problems with attendance. I also explained them that(like the doctor said) my son was HFA mostly because of the early intervantion program he receive from the school and that I was always gratefull for that. I think that the fact that the school have a new autism especialist is going to help the situation, she was there at the meeting and she agree with me most of the time.

[Lisa S]

Graciela,
I'm so glad you called the meeting. I'm happy they have gotten the new autism specialist involved in Mario's education. I believe things will get better for him now at school. You have the right to call a meeting any time you need to, so if things do not improve, I would call another meeting to discuss it.
Lisa

[Deester]

graciela,

How's things going. Can we get an update?

Is Mario being transitioned into Kindergarten?

My home school is working on this. I guess it's going ok. I think they are rushing it a bit.

Please tell us what's happening.

Denise

[graciela]

Yes, things are going better. Mario in been in transition going to pre-school in the morning and in kinder in the afternoon. The teacher said that he probably wil go to kinder all day starting the new year; it seems that Mario does better in kinder that in pre-kinder. I notice that before but the teacher notice that too and that is good or so I thing. I am happy as king! (like the song say) Although Mario is still very behind in writing, he is good with the letters ans so on...
I thing I had realized already that my little prince will always be different but it does not have to be all bad, right? I started to see some positive things. The other day Mario's cousin came to play and she was so jelous. Mario was playing in the computer and when she try to play it y turn out she was too slow for it, she did not even know how to put the cd or start the game. Things that Mario learn on his own long time ago...
So, mmmmmmm..............

[Deester]

My Michelle is very good on the computer too.

Thanks for the update.

Denise

[Akwoessner]

I am so relieved to know me and hubby arent the only one's dealing with having our time alone and it is very difficult and hubby has AS to top it all off . We are fighting a battle now to get some respite here so we can have time to ourselves.

[mlwear]

The only way that we can get respite care is through our County's Community Support Services (formerly Community Services Board) (ours is listed in govt. pages of phone book). After our son turned 6, we had to ensure that he didn't demonstrate an IQ over 70 or we would lose all services we get through them, which is everything. We know he has an IQ over 70, but most IQ tests aren't adapted to evaluate him properly, so that's what it is.
Have you contacted your local ARC chapter about respite -- that is how I got directed to this service.
You definitely need some time by yourselves.

[Dakota Joan]

I heard that if you have a child with autism your chances for divorce were less.

either way - our marriages are very important - and we fell in love by spending time with our spouse. I have a lot of kids - one with autism and I know you can be creative to get that time. Showers together and coffee early in the morning - (or even middle of the night dates!), bike rides?
at home date when dks are asleep? whatever!

here's my fav marriage site btw
http://www.marriagebuilders.com
and sign up for these tips (they are christian btw) and even if you don't "do" what they give as ideas - it keeps you and your spouse thinking about each other on a reg basis! it's great!
http://www.the-generous-wife.com/
http://www.the-generous-husband.com/