How do you parents cope with the constant sadness?

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Since my son's diagnosis is still pretty new (he is only 4.5), I haven't experienced most of what you all are posting about. Some days I do feel an overwhelming sadness that seems to hang around for a while. When I take my son to the playground or anywhere that I see other kids his age playing together and having fun, I just wonder what my son's life is going to be like. Some days I have to just fight back the tears. Then other days I just thank God that my son is walking, talking, interacting with me, laughing, eating well, sleeping ok. I just look at my unique little boy and just thank God that he is mine, and that we are going to get through all of this together.

I am not really looking forward to the day that he will be bullied or picked on, I don't know if my heart can take it. I have had to realize that I need to develop a thicker skin. I too turn to my faith as a means of coping with this. I know that God created my son with a specific plan and a purpose and that I am a part of that plan. Through all of this, God is teaching me to be a more loving and compassionate person.

I also am very thankful for Wrong Planet. It has given me a great amount of insight and support---

Just know that you are not alone, and keep putting one foot in front of the other!

Honestly,
I'm not sure how o cope with the sadness.This is all new to me and I find myself crying everyday at random times-mostly in the shower or in the car where noone can see me.Part of it is sadness and part of it is frustartion that I can't help my little 3 year old son more.I find this site refreshing though.Hearing from adult aspies and hearing the pride they feel in themselves gives me hope.I'm trying to hang on to that.

It is funny that this topic popped up again today. I had a really tough morning with my son. I have been taking him to a music/play class that other kids his age go to. One little boy that has taken an interest in my son, was trying to play with him, and he was playing a little rough like little boys do. Well, my son got upset because he thought the kid was pushing him. Then he barely participated in the class. It just seems that my son just cannot have fun. The more I try to encourage him to interact with other children, the less he is interested. Some days I just want to give up even trying and just stay at home with him. I know that if I do this, he will just be in a protective shell, and will never learn. But, I know his desire to play and have fun has to come from within.

I guess my sadness is just accumulating from several recent attempts to get him together with other kids. I can only hold it back for so long before I find that I need to just have a good cry and let it all out. My family and friends are good about listening to me talk about this, but I feel that I am talking about it too much at some times, and they will never be able to understand or relate to how I feel. I guess I am just thankful that I can come to WP and vent to get it off of my chest!! !

Schlep - I'm sorry you're feeling so down. Have you spoken to a professional about it? There's nothing wrong with asking for help when you need it.

But to answer your question - I don't feel sad all the time about my child. When she was younger, I did not feel sad all the time about my child. I can never remember a period when I felt bad or sad about my child - other than I cried when I had to turn her over to the public school system. She was happy and inquisitive before then, and they damaged her.

She had some whopper issues over the years, but we managed to work through them. I really do believe there is a place in the world for everyone. Right now she's employed in temporary jobs through an agency, because she interviews badly and is not highly social but is very much in demand for her extremely accurate and fast typing, work ethic, and organizational skills. The agency selects the job and sends her out. She gets great references back at the end of an assignment. It's working well. It's all just one-day-at-a-time, though. You don't plan too far ahead, other than having some contingencies thought out. Then you just let things happen. Your son will find his place. He's young - there's time. You can only guide, you can't plan or make it happen for him.

The only real sadness I have that is connected to my Aspie child is that she has some serious health issues. This ventures very far into the realm of "pre-existing conditions" so no private insurance company will touch her. She just aged off my insurance, is now paying close to $600 a month to COBRA each month for as long as she can (and a week's pay for taxes, and a week's pay as a contribution to the family budget - whatever is left she's squirreling away for the future). We'll be in real trouble when the COBRA ends, as she'll have no insurance. Her issues can get expensive. The state plan for uninsurables has a $75,000 lifetime cap on benefits, a six month waiting period (during which you have to pay the premiums) before you can get care for a pre-existing condition, and there's a waiting list. My daughter was in the ER and kept overnight a couple of years ago - the bill for that came to $18,000. The state plan benefits won't last long. She doesn't fall into the "totally disabled" category as she can work, so social security (and, thus, Medicaid) is out. If she has a couple of serious medical crises, they'll bankrupt her and then she'll have no medical care at all. I can't pay for it for her, and cannot borrow against my home, to pay for her care. THAT bothers me on a daily basis, especially when I am trying to get to sleep at night. If she could better handle the social stuff and get a permanent job with benefits, that potential disaster would be mitigated. But right now that's not really something she can handle well. I do not know if that will change - she has a hard time competing for jobs. Once she's in a job, she does wonderfully. But so much depends on impressions, and she doesn't do that well, to get one in the first place.

But as far as her being an Aspie? Sad? No. I'm an Aspie, and I've done ok. I had some serious issues as a young person, and it took me a lot longer to mature and be functional than a "normal" kid, but I'm doing ok. I own my home (can't give it away, but I own it). I got my uni degrees (started when I turned 30). She's making her way. If the medical stuff wasn't hanging over her, she'd be able to do a lot more. But the Aspie stuff isn't a cause for sadness for me.

Nan,

did you consider moving to some other country that has universal health care?
Northern Europe is especially good.

I have. Especially since one of her health issues is heat intolerance. A cold or a cool climate would be ideal. And I do have dual EU citizenship. But my daughter does not.

Believe it or not, you can't just move to another country without their permission, and entry requirements are pretty strict for all the ones I've looked into. As an adult, she does not qualify as my dependent. She doesn't have a BA degree, so she doesn't come out high on the qualification points for work visas - and they do protect their own workers first. Unless you've got a skill that's in short supply, no work papers for you.

We have discussed it many times, and if there was a way, we'd go. I'd have to be able to support myself and her if she can't get work papers. (I'm a secretary and will be 55 soon - I know that's close to the mandatory retirement age in many countries). I wish it could work, but I haven't found a country yet that would take us both and where we could survive financially.

Nan -- thanks for writing and telling about your situation, and your daughter's health issues, and how that's really the only thing that saddens you. When you talk about all of the health issues, it really amazes me. This just should not be happening. Both of you are working, and yet she STILL doesn't have enough medical coverage, long-term? One of the MANY reasons why the U.S. (if you are in the United States) absolutely NEEDS some form of Universal healthcare.

Angelbear -- I so relate to your present situation. I remember feeling exactly like you were feeling when you wrote -- that I just wanted to avoid certain situations. I was quickly becoming a hermit, after previously being a VERY outgoing person. I still feel like that at times, but I can tell you that it does get better.

I was having a particularly bad day when I wrote my original post. Things are somewhat better now. I think the sadness usually comes out of confusion as to what is the best road to take to help my son. Like most of you, I adore my son and think he's wonderful. It's the outside world that is rough. Adapting to the outside world is the hard part, but it must be done in some form or fashion. It sounds as if Nan and her daughter have figured out a great way to find work -- and Nan's daughter is so skilled that she is needed by the working world. That's a great example of what is possible when are children get older.

Hi Schlep - There really is a place for everyone. The catch, I think, is to not to try to force a "square peg" into a "round hole"..... The kid is about to end her current assignment in a week or two, and they've already asked her about her preferences. She tells the agency she'll take anything for any length of time. She does good work - she's not into chatting, she goes in and "kicks butt" until backlogs are resolved, things are organized, and the work is done. She's only missed work for 1/2 day in the last year (she came down with the flu at work and they sent her home) and a few hours when she had to take me to medical procedures that wouldn't allow me to drive home myself. She's always early and she has no problem staying late. She's polite to a fault, has excellent grammar and writes well, is very direct and clear when she communicates.... employers just LOVE that. (Most of them, anyway.) Apparently it's hard to find young people with "old school" work ethics and who do not expect to be promoted within six months of accepting a job. (It's also amazing that so many people just cannot read or write functionally.)

Yes, we're in the USA. Sad, isn't it? For us and many like us the "American Dream" can vanish like a whisp of smoke, although we've been working hard all our lives, doing the right things. The world will pass us by, either ignoring our existence or blaming us for our own problems. We've been "down and out" before, and it's amazing how invisible one can become. Or how despised. Thankfully back then it was only the lack of money that shot us down, and we could climb back up simply through my hard work and taking advantage of opportunities when I saw them. The kid was too little to really be aware of things.

I wish there was somewhere else to go, where I could be sure she'd not end up homeless/medically incapacitated if anything happened to me. She knows about the insurance/medical care thing, but I don't think she really grasps what it could mean in the long run. She won't even discuss it - she gets upset if I try to explain what I see her options to be - so on some level she must know. She says she's ready to move to another country if they'd take us. We're not particularly desirable, though. Canada won't take us because I'm too old. Europe doesn't want us because we don't have a lot of money or particularly noteworthy skills. As far as I know there are no third-world countries with cold climates - short of Shangrila, and I suspect it's hard to get a map to there.

You know, you're going to have bad days about your son. That's inevitable. And when you're having a bad day, it's hard to see past it. But time goes on and things change - hopefully for the better, but they do change none-the-less. On the times I've caught myself going into a total funk that's the only thing I have seen to do: remember that tomorrow will be different, even if only incrementally, and that staying in a poor mood won't help me help my kid in the unlikely chance that something we can use to make life better happens to float by us tomorrow. I have to be clear-minded enough to see it and take advantage of it.

You'll be fine. It's natural to worry about your child. Any child.

Wow, AnotherOne, you have a better understanding of social interaction than most NTs I know (myself included!) and I am in awe of your ability and willingness to see someone else's point of view. I apologize if this is an ignorant question but my recently diagnosed sister lives with me now and I am trying to learn as much as I can; did you come to that realization yourself or were you taught social skills? I ask because empathy and seeing the other's point of view are 2 of my sister's strongest weaknesses.

My sister has severe depression (and I suspect substance abuse problems) on top of the Aspergers. Depression runs on both sides in our family and our mother has spent the better part of her life an active addict so I'm not suprised. All these combined do not make her an ideal job candidate. The one job she had (through an agency specializing in hard to place people) that came with benefits and paid enough for her to support herself was lost due to her missing work and coming in sick due to hangovers. Now she is receiving unemployment and we're trying to navigate Medicaid, state aid, etc in the hopes of finding some sort of help for her but since she has worked in the past we are hitting alot of brick walls. I am so frustrated as I don't want handouts (I don't even like her collecting unemployment), I just want some help for her as far as the depression so she can deal with the other stuff and it seems like it has to get much worse before any is available

good luck, alpha. the aid that is out there - what there is of it - is fractured/fragmented. each state runs their own programs. in california there is no medical care program for a single adult unless they have a formal designation as disabled (aka, they are getting social security). i hope you are not in the deep south, as things are more draconian there than here.

even in good economic times, there's not much out there. in bad times, it's the first thing they cut. after all, nobody fights back....

Thanks AlphaSister. To answer your questions, my "knowledge" came with age and after years of anger and explaining my point of view. My brain is very analytical and practical so I figured out that it won't work so I do what can be done. Can you ask your sister if she knows how you feel? Maybe empathy is not a problem, for example I know how someone feels but my emotional reaction is not understandable to them. If your sister can recognize people's feelings than she can learn how to deal with it, i.e. ask how one feels, say "I am happy or sad for you" and similar. It is not perfect but it is acceptable level of behavior.

People do have different abilities but what is more important, different desires. Do you know what your sister wants and what makes her happy? Is there a hobby or something that she can hang on to get out of addiction and endure work and dullness of everyday life?

When my daughter was diagnosed (10 years ago) I was angry. Not that she was different - but at the overview and prognosis I was given... Like she'd never achieve anything or be as functional as others.

Then I was sad - the difficulties she had worried me and I felt bad for the things she had to endure.

Then I just said screw it - she's a beautiful child and she has all of the potential - we just need to figure out how to tap into it... That took time. There were a lot of tears on all sides with that. But she eventually - with a lot of help - got her own formula and she's doing really well scholastically. Actually better than most. And doing it in regular classrooms wih the same cirriculum that the other kids are expected to follow.

Socially - that's been an entirely different battle. She's always been pretty aloof to others. She can relate to adults very well - kids her own age - not so much. The fact that she didn't seem to relate and 'join in' used to bother me. I thought SHE needed to do that because I do that. The other kids do that. It's expected. My sadness and worry about it was all for nothing. She's happy having one or two people that she considers friends. She doesn't need a group, my wanting her to be what I am and feel the way I do was actually hurting her. It made her feel like something was 'wrong' with her.

Parents need to allow their kids to have their own feelings - even if those feelings are completely foreign to the parent. Projecting your hurt, anger, sadness and worry onto your kid only makes them more aware of how different they are and that will lead them to being self-conscious about it. To a kid - if your parents keep reaffirming that you're different (weird) - then everyone is going to think that way about you too. That's a depressing thought isn't it?

Acknowledge that they are different - but acknowledge it in positive ways. Trust me - you can get to a point where you look at that child and feel nothing but pride and joy.

We live in Chicago, she was in CA prior to that. I used to work in HIV services in IN and would advise anyone newly diagnosed to move to Chicago if at all possible so I know that what help there is is much more likely to be found here than anywhere else she has been or could be (we have family in IN as well). You hit it on the head as far as no one fighting back-the folks that need the help the most are usually too busy simply trying to survive and are the least able to demand more. Those that don't need it are usually not aware how necessary it is until it affects someone they know or they see some report pointing out how most of the homeless are folks in need of mental health care/substance abuse treatment.

This is a huge area of confusion for me with my sister. I tend to be a loner myself, prefer a small core of friends I have had for 5 years or more, and am quite content to spend a Saturday night riding my bike and reading. My sister never expressed loneliness and told me being in large groups was hard as she felt she needed to keep track of all the conversations. "Fine", I thought, "Fellow loner; doesn't care to 'fit in' or collect friends."; then last week she got sloppy drunk and sobbed, "I get so lonely I can't stand it". Now I don't know what to do, how to help someone with very limited social skills "make friends" when its not something that comes naturally to me? I have urged her to visit this site and perhaps try to strike up friendships, aquaintences through here as I figure other folks dealing with Aspergers will be more understanding and tolerant of her "quirks". How do I help someone who comes off as not wanting to be around people make friends?

How old is your sister? I mean - obviously - she old enough to get 'sloppy drunk' so she's not a child anymore...

I'm sort of like you - but I have lots of friends - hey are friends to a certain extent - I only let a few 'into' my 'unguarded' space... Yeah - strange but the easiest way to explain it.

For your sister - everyone has their own weird little quirks - I have some of my own - and so does just about everyone I've ever met. And most people do find it a little bit intimidating to just start a conversation with someone cold - it feels weird. The only people who are good at that are used car salesmen. Really. You sister must have things she's interested in. A hobby - art, reading, photography, biking, dog, cats or horses... Something. Help her find something - a group where people have that similar interest and participate in it. Go with her to 'support' her. It's much easier to strike up a conversation when you KNOW you have something in common. The next step would be for her to initiate contact (after she's comfortable with a person) other than the group setting. Your sister probably has a hard time following a lot of different conversatons and groups are confusing for her. Plus people are less likely to 'reject' another person in an individual situation as opposed to a group. In groups - people probably aren't ignoring her - they just don't know her because she is quiet and doesn't make herself known. My daughter is like that. By putting her in smaller groups with kids who have similar interests - she is able to communicate better and begin to actually 'connect'.

It may take a while - and she may not have 25 friends - but there is someone out there who will like her as much as you do.