Who worries about their child's future?

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I really feel the need to respond to this, hopefully to share a little bit of a different perspective on the feeling that you have regarding parenting a child with autism.

When I wanted a child I had picture of dance class, storytime at the library, sports teams, boy scouts, school plays...all of the normal, everyday stuff you do with your kids. Well, that didn't happen...

My son cannot do team sports, he was in special needs preschool and most of our activities were sitting and "teaching" him how to talk, how to play, how to sit, how not to hurt himself or others, how to deal with some sensory stuff, how to get him to eat.... It seems that everything I did with him always had the thought behind it of "what can he learn from this". I had to remind myself to make time for him that is just "play", and not wrap myself up in so much therapy that I forgot to enjoy my child.

This feeling you have about what "should have been" IMO is absolutely understandable and I feel that there is nothing wrong with it, no matter if it's when you get the diagnosis or 5 years later. We all mourn the loss of a dream when things don't happen the way we invisioned. It is not at all the same experience raising a typical child as it is a child with autism, (or any other difference). When you grow up you learn social skills, you learn from your parents values and behaviors, you learn how to discipline and encourage your children based on what your parents did. When you have a child with autism, you have to totally throw out the window EVERYTHING you have learned and start with a fresh slate. You can't discipline the same, you can't teach the same, you can't communicate the same, they don't learn the same, you have to really get inside your childs head to realize what's exactly going on and address their often unique issues with creativity and patience. On top of that you have to deal with other people who don't understand, being critical of how you deal with your child, (often even within your own family), or don't want to help, AND, at least where I live there aren't any professionals worth their salt to help guide. You have to do and learn all of this on your own, and much of that is trial and error. Then you have to worry about whether or not you are too late once you figure it out. How much time have I wasted? My childs needs are changing and what the H** do I do now? It is very overwhelming and very scary for the exact reason why this post started in the first place....am I going to screw up? and is my child going to suffer because of this? Am I doing the right things, can I afford to help him enough, where do I take him, how do I keep him from being abused and bullied, am I picking the right therapy, and the right number of visits, is my money being spent the best way. I could go on and on and on and on. At least with NT parents and NT kids, you can relate because you don't think so differently, you can use what you have learned from your own life, and you have other people to suppport you. Not as many parents of AS kids out there as there are NT.

I really feel that because you feel like you didn't sign up for this, or that it's not your destiny doesn't mean that you aren't accepting your childs autism. (with all due respect to Cailin) These feelings are very natural, and what every parent feels at one time or another. Raising these kids are hard, not because they are difficult to raise in themselves, but because you are alone, overwhelmed, missunderstood, crazy with worry, not sure you are doing the right thing because this is not something that is common in most peoples lives. I feel that your feelings have nothing to do with you not coming to grips and accepting your child. (again, with all due respect to Cailin) It's often about all of the extra elements that come with it, from what is the best way to raise my child with what I have to work with, and the weight of the extra responsibility of making sure you give them the tools to have a good life, and particularly, who do I want to raise my child and will they understand him like I do, and if not, who will?

I love my son dearly, I wouldn't change a thing about him, but I struggle with everything above and on some days I feel like you do...like I didn't sign up for this, but personally I feel that way because it's hard, and the responsiblity is HUGE, and I worry I'm going to screw up. Also, I too would be able to stay home if he was typical and in regular school and I really wish I could do that. Instead I have to work to pay for private school, and private speech and social skills, and I don't get the time with him that I really wish I had because we're never home. do I regret that? NO, do I wish it was different? Sometimes. Do I wish I didn't have the fear, confusion and heartache that comes with it? Absolutely. (especially with the bullying and being left out and him not understanding why) Do you learn and grow from this? Yes. Do these kids make you a better person? Hopefully. My son has made me and my husband better people.

Your child will be fine, as will mine. If you are on here asking these questions then you are doing what is best for your child. The nicest thing anyone ever said to me was that I was meant to be my son's mother. Maybe you were meant to be your childs mother, and you just don't know it.

This is kind of what I'm saying in reverse. If you can't relate it makes things so much more ambiguous and much harder. I am a normal, average NT. Nothing special. I have a child that has the maturity of a 5 year old, the brains of a 12 year old and the interests of an 8 year old (his age) What do I do with THAT????

You meet his needs as best you can, and love him. It wouldn't necessarily be better, or easier, for either of you if you were both NT or both autistic. My mom understood me really well and my older sister not at all, but she didn't do that great a job caring for either of us, for various reasons.

My son is a lot like me, and that does have benefits. I understand a lot of his differences, and my husband is used to our weird ways already. But I often feel like the blind leading the blind when I try to help him with stuff like making friends and social skills. And I have a lot of trouble dealing with his noise and chaos.

Social skills are really hard. Really, really, really hard. I'm very social and have no problem interacting with anyone and I have NO CLUE how to teach him social skills. I work with a lot of people on this and he still doesn't seem to make real progress in certain important areas. (such as not being the bully (when he is not intending to be, as well as not setting yourself up to be the victim) and being a good sport, and communicating properly and not "sounding" rude, etc.. At least, if you have a social skill deficit, you can relate to how hard it is for your child, and maybe teach him things that worked for you. Me, sometimes I just don't understand why he doesn't understand something that to me is really clear. I need someone who actually went through it to enlighten me. That is why I'm here on this website and I don't know what I would do with out it. Everyone on here keeps me sane and I love all of you for it!

That said, I agree...parenting is hard no matter what you have been given or who you are. We all make mistakes, we all struggle, and we are all here to help each other.

I understand what your saying mommyjones, and I can't tell anyone that what they are feeling is wrong. But my point is more about the root of those feelings. Are my days full of roses and sunshine? Not always. Do I struggle deeply with how to respond to my son's needs? Absolutely. Did I envision dance classes and boy scouts when I decided to have a child? No. I envisioned caring for the child that would be mine.

My point is more about how so much of our disappointment comes not from who our child turns out to be, but what we allowed ourselves to expect (unrealistically - and selfishly) in the first place. Our culture places such a ridiculous value on perfection, conventional beauty, and 'normalcy' - all wrapped up in dance classes and boy scouts. My point is that if we all had a more open mind and a broader definition of what normal is, and what it means to ask for the role of parent, we'd be more able to accept the destiny we find and more able to find the beauty in it.

I didn't mean to say that you are telling someone that their feelings are wrong. I'm very sorry if I gave that impression.

I see your point and I totally agree with it, but I think I'm talking something slightly different. I believe the desire for perfection is not always the root of that kind of feeling. I feel the same way sometimes because I just don't feel equipped, so how can this be my destiny? Sometimes you just want to scream "I wish things were just NORMAL!" (however that person defines that) I think in an emotional state it's more about making things easier at the time. I think that is where this person was coming from. Guilt. Guilt for losing it, or doing something she feels is really wrong, not because they haven't accepted their child the way they are.

Expecting "perfection" is unrealistic and selfish, however I see nothing wrong with wanting a child, and also wanting to have a life with regular "normal" things like boy scouts or baseball or whatever their child likes, and to experience the joy of that activity with their children. What's hard is when your child wants to play baseball for example, but can't because of whatever makes it hard for him (for my son...winning, sportsmanship, understanding the concept of a team). I want him to enjoy his childhood, and I want to participate in that joy. It's heartbreaking to have a boy who cries every time he tries something he wants to desperatly do, but can't because he doesn't understand and you have no idea how to help him. I don't want him to be perfect, I want him to be happy and enjoy what HE "wants" to enjoy.

That said...I think my son is the most beautiful, interesting, wonderful, frustrating child on the planet and I love every molecule of his existence and I wouldn't change a thing.

If only there were more people like you in the world.

MommyJones, I really like the way you put this, do you mind if I quote this for my son at his school? It really hit it on the head. I was trying to figure out how to say this and then I read your reply on here.

I think this is where we differ... I have had those feelings creep in but... for me, philosophically, it's really important that I reconsider this type of thought process when it starts to occur. Because I do believe there is something wrong with wanting a child who ________ (fill in the blank). Meaning - I believe very deeply that that statement should end after "child".

"I want a child".

I think there are things we should allow ourselves to feel, and then there are things that we are likely to feel but are self-indulgent, and those are the feelings that for me, are important to push past. Lamenting (at least for any extended period of time) what our child isn't will not move us closer to respecting them as a whole, complete, beautiful person. Believing that the child you got is not the one you should have.... I just don't think that's a healthy place to be in (again, at least not after the initial shock wears off). But I know everyone deals with things differently, so this is just my perspective.

Got it....I see what you're saying. Nevertheless, even though I feel it's natural to feel that way from time to time, (and to me, natural is not necessarily wrong, it just is, and I think that's what I'm trying to say) however, I do totally agree with what you say this type of thinking can do.

Personally, I did have a dream before having a child, and that dream didn't exactly happen....but....I don't feel I got a raw end of a deal and I don't think I'm losing out on anything. On the contrary, it's the best decision I have ever made and he has enriched my life more than I could have ever imagined any child could do. I just didn't expect to have such a unique individual.

You go right ahead! Nobody understands this unless they live it.

I worry all the time to the point it can make me physically sick, but I have my own set of issues. I have made provisions with other family members and I do believe that Bret will be able to work and live independently. I worry more about falling in with the "wrong" crowd and deviant behavior due to his social issues. He is only 8.

This is a great answer to a very complex issue

An excellent post, but two points.

1) Not all Aspies are intellectually suited for college and advanced degrees, just as not all NT kids are. Parents need to look at other options, too.

2) I disagree about the usefulness of the "social stuff." My son has been learning so much and getting to the point that saying things like "please" and "I'm sorry" come naturally and easily to him. He's learning the rules of conversation and how jokes work. Not only does he *want* to understand this stuff--and it's really clear that he does--but it makes life so much easier all around. Only the most brilliant people don't have to go to job interviews and deal with co-workers.

There is always room in my house for one more aspie.

I just wanted to say that I think most of us are trying to come to terms with the curve ball of ASD being thrown at us. Caitlin, I really admire your attitude about all of this, and I hope that one day I will be at the level you are at. I agree with you in the fact that I really didn't have the mindset that I want my son or daughter to be this or that or play this sport or be in this group or that. I just desperately wanted to be a mom. My whole life, I just dreamed of having a child. I just was not prepared for a child that is so different from most other kids. Do I absolutely adore my son? YES!! ! Does it break my heart that he can't learn things as easily as other kids? YES!! ! But the biggest thing that breaks my heart is that he doesn't have any idea how to interact with other kids and I just worry that he is missing out on the joy of being a kid.

This website has really helped me though in understanding that my son is wired differently, and that he may not be unhappy because that is not how he is wired. So, I am trying to give it all to God, and day by day the heartbreak becomes a little easier to bear as I realize how wonderful my son is and how much trust God has placed in me to raise this unique little guy. I am learning to roll with the punches and just take it as it comes and just love my son and do the best that I can with this----

Thank goodness we all can share these thoughts here------

I would like to add to this that in my experience, the fastest road to not only a job, but advancement either through finding other jobs or getting promoted is networking. Especially in hard times, where unemployment is really high, or if you live in a depressed area, knowing someone can make the difference between eating and starving. If you don't know how to get along with people, who is there to recommend you or provide you with an opportunity? You don't need to be the life of the party, but you do need to learn how to not turn people off and make good first impressions. Pragmatics are very important.