Is having an autistic child a burden?

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Wrackspurt
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23 Mar 2013, 1:47 am

Maigheo wrote:
I read this a lot and it makes me feel really bad for my parents. I was doing research for my research paper and even found a scientific study measuring quality of life in parents with an autistic child.

I know my parents love me, but deep down I've always felt like an unwanted child, because I sometimes think they would have been better off with a 'normal' daughter. I actually think they only love me because I am their daughter and they simply have to. Do you ever feel as if your autistic child is making your life really difficult and how do you cope with it?


I've felt this too. Just the other day my mum was talkingabout two kids across the street I grew up with (we ran into the younger at the grocery store at the time and she has done so much with her life -- meanwhile I still live with my mum and am trying to get another SD to be able to get milk on my own) Later we were talking about her updates and my mum mentioned how proud she was of both of those kids.. who are now young adults one of them with two kids and happy marriage.

I'll never have kids (as I don't want to pass this onto another soul) I'll never get married, as nobody would want me. I'll never go to collage or be as advanced as the younger sister of my two friends. Made me think.. what do I have that would make my mum proud of me? I'm just a burden, when at her time of life she should be enjoying her freedom and I should be taking care of her problems.

Such a simple thing like your mum being proud of others can really take the piss out of you.

On the end note. I myself and really proud of my friends too, they are carving their own piece of this horrible world and putting their mark on it.



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23 Mar 2013, 6:51 am

Wrackspurt wrote:
I'll never have kids (as I don't want to pass this onto another soul) I'll never get married, as nobody would want me. I'll never go to collage or be as advanced as the younger sister of my two friends. Made me think.. what do I have that would make my mum proud of me? I'm just a burden, when at her time of life she should be enjoying her freedom and I should be taking care of her problems.


I would not view it that way. Parents often have little fantasies in their heads of what their kids will be like. Kind of like the people who fantasy dream about a future wedding (even if they are too young to even know who the bride/groom might be.) The grown ups adjust to what is. Reality never equals the fantasy one conjures up. Even.With.NTs

If you have ever read any advice columns (I find them to be a good way to learn about NT human nature) you would see so many letters by NT KIDS bemoaning that their parents want them to be "mini mes" and feel that they are a disappointment to their parents b/c they do not want to live up to whatever script their parents have laid out for them. It is the parents who are in the wrong, for not accepting that their children have their own free will, their own personalities and their own interests and aptitudes..

If you do not want to get married that is one thing. Saying no one would want you is a whole other thing. You may not be attracted to people with NT tendencies or feel you would be compatible with them. I know that if I married an NT that would not have worked out. There are all sorts of eclectic people out there. So, if you prefer not to marry, that is cool, but saying no one would want you is just negative thinking.

As far as your mom goes, her being proud of other people does not reflect not having pride in you. I have an NT niece, who is into all sorts of frou-frou girlie-girlie stuff, which is not my cup of tea, Her mom was a cheerleader in HS (also not a thing I understand) and my niece might choose that as a goal as well, when she is older. If she makes the cheer leading squad I would be proud of her for accomplishing a goal she wanted to achieve, but it doesn't mean anything beyond that, if you know what I mean. It does not mean I want my son to be a cheerleader, or a football player (male equivalent as far as social status and social milieu goes) I want him to do what makes HIM happy, not what society has decided should make him happy.

Your mom is probably proud of your accomplishments because they are what suit you.



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23 Mar 2013, 10:13 am

Wrackspurt wrote:
what do I have that would make my mum proud of me? I'm just a burden, when at her time of life she should be enjoying her freedom and I should be taking care of her problems.


Although both of my kids have wiring "issues," I can say that at this point in time, my son's issues are much more debilitating for him than my daughter's are for her. This has changed. She used to face more challenges, and for all I know, the tables will turn for them again.

What I can tell you is that I feel more intensely proud of my son, even though his accomplishments may appear smaller to the outside eye. This is not to say that I am not proud of my daughter, because I am. Very much so.

But lets say she brings home all good grades on her report card. I am proud of her. But I am not proud of her to the point that I feel my heart swell and my eyes tear up. She had to work to get those good grades, but to be honest, I don't think she needs to work any harder than any other kid academically at this point. She is bright, and learning comes fairly easy for her. So I am proud because she gets good grades. And I tell her so. As any parent would.

But the week that my son remembers to turn all of his homework in, for all of his classes...I am choked with pride. I can literally feel my heart swell and I my eyes fill with tears. Because I know how hard that is for him. Exceedingly so. It is an accomplishment that, all things considered, took a lot more "work" than his sister's good grades. Even though on the outside, most people would think it is no big deal at all that a 6th grader turned in all of his homework. But for my son, this is a monumental accomplishment at this point in time.

My point is, it is possible that your mom is not measuring you against other people's accomplishments, but is simply immensely proud of the things that you have been able to accomplish, in spite of all of the obstacles you face.


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Wrackspurt
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24 Mar 2013, 12:46 am

^^ Thank you both, that is kind of you to say.

As for the wanting/marrying thing, there are other things with me that most people would not find appealing. Is this my choice then? Yes, I suppose. I'm not willing to weed through the many masses who would find these issues atrocious just to find the few that might, slightly, possibly not and want me. Too much pain. But again. Thank you.



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25 Mar 2013, 9:23 pm

I've never seen my son as a burden.



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26 Mar 2013, 5:44 am

Wrackspurt wrote:
[I'll never have kids (as I don't want to pass this onto another soul) I'll never get married, as nobody would want me. I'll never go to collage or be as advanced as the younger sister of my two friends. Made me think.. what do I have that would make my mum proud of me? I'm just a burden, when at her time of life she should be enjoying her freedom and I should be taking care of her problems.

.


As well as PP, I am much more proud of my ASD son for his accomplishments then I am of my NT daughter. Not that I am not proud of her, but for him things are harder and he has to work more, so when he has an accomplishment, it means so much then when it comes effortlessly for her.

Example (mind you my kids are YOUNNG). When my DS learned to write his name, he was 4 1/2, it looked like garbled chicken scratch, but you could JUST make out his name. I was so proud of hiim with all his OT issues, that he was able to make that chicken scratch look like his name. I photographed it, sent pics of it to all famil and freinds, etc... My NT DD has been writing her name for a few months now, she is not yet 4, and it is MUCH more legible then his was. I shared her writing with a few people when they came over, but that was it. She has been coloring and making lines and shapes for some time now, and it was no surprise that she was able to write her name. I made a big deal to HER about it, how wonderful it looks, how proud she must be, etc...but the feeling of OMG PRIDE and accomplishment I had when m son was able to write is completely different when DD wrote her name.

SOO< not sure if that made any sence, but the pride is there, its different for each kid!


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kalor
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27 Mar 2013, 9:39 pm

Maigheo wrote:
I actually think they only love me because I am their daughter and they simply have to.


Garbage. Where does it say they have to? There are thousands (if not millions) of parents out there that don't.

I have three boys. One is an Aspie. All are hard work, all are very different, all are exasperating at times, all I would die for.

When you become a parent it's easy to quantify the bad stuff: you can't see your friends anymore, you have far less money, you have little time for yourself, etc. It's impossible to quantify the feeling you get when they say they love you. My wife and I pour our lives into our boys because we love them so much, yet occasionally get accused of not loving them (usually over a specific issue of discipline/boundary).

I thought our extended families didn't love us at all. It took many years to see that they actually express their love all the time, but not in the way that I want to be loved. I obviously don't know your family at all, but some people's words can be crusty but their actions selfless, for example. Have you read "The five love languages"?



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28 Mar 2013, 5:57 am

kalor wrote:
Maigheo wrote:
I actually think they only love me because I am their daughter and they simply have to.


Garbage. Where does it say they have to? There are thousands (if not millions) of parents out there that don't.

I have three boys. One is an Aspie. All are hard work, all are very different, all are exasperating at times, all I would die for.

When you become a parent it's easy to quantify the bad stuff: you can't see your friends anymore, you have far less money, you have little time for yourself, etc. It's impossible to quantify the feeling you get when they say they love you. My wife and I pour our lives into our boys because we love them so much, yet occasionally get accused of not loving them (usually over a specific issue of discipline/boundary).

I thought our extended families didn't love us at all. It took many years to see that they actually express their love all the time, but not in the way that I want to be loved. I obviously don't know your family at all, but some people's words can be crusty but their actions selfless, for example. Have you read "The five love languages"?

Each person's experiences are different. parents are best summed up in the lyrics of a song by Savage garden called 'Affirmation'
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02 Apr 2013, 10:59 pm

Don't worry too much about it, you didn't choose to be born or to be born with ASD or any other traits. Whether AS or not everyone is born with certain traits that may make them more or less 'difficult' to bring up.


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07 Apr 2013, 8:23 am

I don't think my kids are a burden. It is hard raising kids no matter if they are NT or not. Do my kids present different challenges? Yes. Do I sometimes watch other moms with kids at the playground and get jealous that their kids seem to effortlessly join the play? yes.

BUT, all families have their own cross to bear. I remind myself often that appearances are not all they are cracked up to be. I have NO idea what life is like for those kids and their moms at the playground. Honestly, I have a pretty sweet life and while my kids can be a challenge, they are amazing... And, btw, Aspie kids say the funniest s**t EVER. :) NT kids can be quite boring in comparison.



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07 Apr 2013, 4:35 pm

On the question of feeling pride in your kids, I think several posters have already summed it up nicely, but I'll echo the sentiment:

No one knows better than a parent how difficult certain things can be for their child, and so you feel tremendous pride in knowing how hard your child had to work to accomplish what they have accomplished. Perhaps the victories are more personal and difficult to share outside your home, but they are intense and beautiful. When someone is born smart and talented we, as parents, don't have to do a whole lot to send them successfully on their way. A lot of parents like to give themselves credit for it, but I know from my different experiences with my very different kids that it really isn't anything I'm doing that will make or break my NT child, when it comes to her natural gifts. But when someone is born with difficulties, parents have a lot more to sort out and teach the child, and many more ways to go wrong with it. We have to teach that child how to persevere and how to enjoy the victories they do achieve. And then that child pours in so much more effort than you could ever imagine yourself doing, and then runs with your guidance so much further than you dared hope for ... the pride in that is huge. Amazing. You know that not everyone could have raised this fascinating person, and you know the gift of being there for them is special to you. You learn to really see the world from someone else's eyes, which you might never have otherwise had to do.

There may be days the difficulties seem overwhelming, but life isn't about living an easy road. It is about learning and growing. Coming to understand that is a gift you get when you have a special needs child.

And, yes, my ASD child is funny. And so ... interesting. He fascinates me every day. Such a gift.


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17 May 2013, 8:43 pm

DW_a_mom wrote:

When someone is born smart and talented we, as parents, don't have to do a whole lot to send them successfully on their way. A lot of parents like to give themselves credit for it, but I know from my different experiences with my very different kids that it really isn't anything I'm doing that will make or break my NT child, when it comes to her natural gifts. But when someone is born with difficulties, parents have a lot more to sort out and teach the child, and many more ways to go wrong with it. We have to teach that child how to persevere and how to enjoy the victories they do achieve. And then that child pours in so much more effort than you could ever imagine yourself doing, and then runs with your guidance so much further than you dared hope for ... the pride in that is huge. Amazing.

There may be days the difficulties seem overwhelming, but life isn't about living an easy road. It is about learning and growing. Coming to understand that is a gift you get when you have a special needs child.



This.

I don't take any credit for my 7-yr-old daughter's smartness or academic successes. I think the only work I have put into her was getting her into speech therapy at age 2 when she wasn't where she should have been. She caught up in 6 months' time, and, by 4, had outpaced most of her peers. She could read by 4, and wrote her first poem at age 4-and-a-1/2, titled "Colors & Me". She is smart, funny, creative, gifted in mathematics and a pro in music. I know she will blaze her own trail. She already tells me that she wants to be a Hollywood movie script writer when she grows up, and maybe make a few cartoon movies, on the side, too !

I did NOTHING that facilitated her smartness - NOTHING. We (her parents) gave her a good home and access to books & learning materials, and she took it from there. I am immensely proud of her achievements, but I did nothing to enable them. My part was zero.

Then, there is my son. We work very, very, very hard with him. He has severe fine motor, cognitive and language delays. He is currently more like an infant than a preschooler. But we plod on, and every little gain, every little step forward, is HUGE for us. The day he first managed to stack rings on a ring stacker on his own, I bawled. This was 7 months ago, when he was 3.25 years old. He has come a long way, and with every step forward, I cry because only I know how hard this is all for him and how much effort has gone into making these steps forward possible. The day he speaks his first sentence, I am sure to break down and sob my head off -- I know that already. But i will also be so darn proud of him for getting there.

My little boy's progress, given his many challenges, is a matter of pride for me. I am proud of my daughter, too, but she was born with a high IQ, clearly gifted almost from birth. But when my challenged son takes his baby steps forward and masters skills that were nothing to his sister, I feel sheer parental pride, and I cheer him on vehemently, screaming my joy until I am hoarse and can scream no more. I couldn't cheer him more, if he won the Presidential election and was inaugurated into office ! !

My son has taught me more about life and more about myself than I ever thought possible.



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20 May 2013, 9:52 am

mikassyna wrote:
You never go into parenting expecting a perfect child--it is unrealistic. Even NT children can have conduct disorders, mood disorders, personality disorders, genetic disorders or predispositions, and on and on. NT children who go through childhood without a hitch can still turn out addicted to drugs, alcohol or get into trouble with the law. Raising kids is challenging no matter what, and it is a RAINBOW of challenges, just like autism is also a rainbow spectrum of its own. Kids have important jobs: TO GROW UP AND MAKE LIFE DIFFICULT FOR PARENTS--REGARDLESS IF THEY HAVE AUTISM OR NOT. Any parent who decides to have children should understand this is the fundamental law of nature. Children do not come out of the womb taking care of their parents--it's the other way around!

:-D

You have some excellent points here, especially about how children are basically designed to make life harder for their parents. I did want to point out though that "NT" is used on many different forums to mean people that have no disorders of any kind, and not just those without Autism. So by the common usage definition at least, anyone with a disorder or variance is not an NT.

I took your post to mean that "non-autistic" children can be just as hard or harder as autistic ones, and I agree with that 100%.

claudia wrote:
Of course he isn't a burden, instead I ever felt inadequate to raise him.


I feel this way frequently. The hardest part for me is mostly dealing with other adults, and because of my son's issues I have to deal with other adults more often and in stressful ways. All the advocating (i.e. arguing with doctors, insurance, and schools), dealing with negative public reactions, and criticism make me feel like a failure. I'm very antisocial myself, and I have to take the social burden for both of us on myself. It's like the difference between having a cat and fern. A cat makes me feed it, while a fern will sit quietly on the shelf while I forget all about it and it dies. My son doesn't request social interaction, so I have to figure out what would be fun for a five year old, schedule it, deal with negative interactions between my son and others, etc. and it's so hard to do this because I don't want to do it at all. A social child would nag at me to play with kids, and it would take a lot of the decision making and stress away. But really that is just my problem, most parents seem to like socializing. If I was more normal then this would be easier. I hope that makes sense.

I have two sons and one is much harder to raise than the other. His ADHD type traits though are the ones that really overwhelm me. It's the never ending high level of supervision he requires, the constant banging and general LOUDNESS, non-compliance, and impulsiveness. We toured kindergarten recently and he wouldn't stay with me at all. I didn't hear a word the guide said, and we were separated from the group several times and became lost. He ran into random classrooms, interrupted a play, grabbed art supplies and projects, interrupted tests, got in front of a projector, and so on. He talks far too loudly, and screams in a panic of I try to hold his hand or touch him (sensory issues). Parents and teachers tend to offer parenting advise or just give me looks, and I wind up feeling like a failure.

His other traits that are considered unusual, however, are awesome. I love his uniqueness, and the way he thinks. I can understand him in a way I can't other children/people.

Sometimes I see other problems parents have, and I am grateful I'm not dealing with those (I know, not very nice of me). My son is almost never angry, jealous, or aggressive. When his little brother was born he seemed to view the whole thing as a fun and interesting learning experience. He liked to help out (or try to) and wanted to know everything about babies. It was an almost effortless transition.

My "easier-to-raise" son is three, and while mostly sweet and empathetic, he likes to kill insects. Not in a tearing-wings-off-butterflies-serial-killer way, but in an instinctual something's-crawling-on-the-ground-quick-stomp-on-it way. It horrifies my husband, myself, and my older son. I keep trying to teach him not to do this, but it's like it happens before he has time to think about it. It's very disturbing to me. He also is hard in some ways because he learns differently than the rest of us. My possibly-ASD son can repeat language perfectly, and so was very easy to teach. He only has to hear something one time to remember it. My younger son had speech problems we created because we didn't put out the correct kind of effort for him. He had a lot of animal names mixed up, and other things too.

But I will say that a child that STAYS WITH his or her parent in public is something I envy. The endless chasing, arguing, and inevitably carrying a kicking, biting, screaming five year old every time I leave the house is exhausting to me. I'm also jealous of parents with children that are potty trained. Changing a five year old and a three year old multiple times a day is something that I could really do without. These two issues are the only reasons I don't have one more child, that I otherwise really want. I don't want three kids in diapers, and I don't think I could safely transport three kids when only the middle child will stay with me.

I am glad I had my kids. I see a lot of my husband and myself in both our kids, and believe we are well suited for each other. There have been times though where I have become so desperate that I have wished horrible things like about giving a kid up for adoption, where I have curled up in a ball on the floor and just sobbed, but it never lasted for more than a few minutes, and I never let my kids know. It was just a bad moment, and it passed, and I am 99.99% of the time happy that I have the exact children I have. I love them very much, and I feel ashamed even writing that I had such awful thoughts (usually after a lot of sleep deprivation and a series of bad incidents). But I just wanted to point out that it is possible to think something that terrible and to not really mean it. I hope that makes sense.

My overall belief is that neither of my kids are burdens. I do doubt my ability to meet their particular challenges, and the one with the possible-ASD does require more effort. However, it has been getting easier in some ways as he gets older, and I believe this will continue as I hone my skills as a parent.



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20 May 2013, 11:58 am

I love to read the heart warming expressions of love on this post. It is perfect timing for me!

I want to point out that in the OPs post, the study referred to parental quality of life. I would imagine this is being measured objectivly rather than our subjective (and emotional) responses.

I am guessing, but I might think that "quality of life" could be measured by: participation in social life, hobbies, % with successful marriages & wealth. It would be my guess that folks with special needs kids do not have as much of this stuff, as do folks with NT kids.

However, when you add the subjective and emotional part, we might disagree, believing our quality of life is just as good. We don't have those things because they don't matter nearly as much as our babies do!



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20 May 2013, 5:44 pm

Kailuamom wrote:
I love to read the heart warming expressions of love on this post. It is perfect timing for me!

I want to point out that in the OPs post, the study referred to parental quality of life. I would imagine this is being measured objectivly rather than our subjective (and emotional) responses.

I am guessing, but I might think that "quality of life" could be measured by: participation in social life, hobbies, % with successful marriages & wealth. It would be my guess that folks with special needs kids do not have as much of this stuff, as do folks with NT kids.

However, when you add the subjective and emotional part, we might disagree, believing our quality of life is just as good. We don't have those things because they don't matter nearly as much as our babies do!


I believe that the meaning of "quality of life" comes to change completely once you have a child with as many challenges as my son has. Right after his diagnosis, I lost most of my friends through a combination of factors, mainly the lack of time to deal with anything other than trying to get him the best help possible. I began to have less and less time for my friends. Eventually, when I did try to reconnect, I found that we had nothing in common anymore. My mind and heart were filled with worries over my son, and he was all that I could talk about - which gets a bit much, after a while, for those who have "typical" kids and just do not understand what a challenge my son can be to raise.

I have to be honest - I have NO life, to talk about its "quality". I am on the go from sun-up to sun-down, and, when I do have some down time (as when he is in therapy and I am in the waiting room), I catch up on my emails, return phone calls, browse the web etc. There are days that I just get overwhelmed and frustrated, and then there are days that are a lot easier. And then, there are those days that I feel completely numb. I know that early intervention is key and all of this work that is going into him now can onlynhelp him migrate across this spectrum to become reasonably functioning, but the amount of work and the uncertainity leave me feeling very resentful and angry. Why, me ? Why did this have to happen to MY kid ? Why can't he just talk and do the things other kids do so easily ?

Questions no one has answers to, except God, and he probably isn't quite ready to discuss this with me just yet. But my son will get there, it just isn't going to be tomorrow, or next week or even next month. And giving up isn't an option. Even if his prognosis is as dire as can possibly be. But this is my reality now, and I try to make the best of it. And it could be a lot worse... So, given the help he gets and the progress he is making, I would say that my life is... OK.

As Krishna says in the Bhagavad Gita, "Karman Eva Adikaraste."



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22 May 2013, 11:20 pm

Wow, I felt compelled to register just so that I could help reply to this question! It's funny that I stumbled across this because I was just thinking about it today. My son challenges our family in a way that makes us collectively stronger, more cohesive, more resilient, more grateful, more giving, more quiet and introspective... better human beings all around. I thank god for all that he's brought to our family. There are difficult moments, but they define and bring incredible (and much needed) contrast to the great moments. I really believe that ease and leisure and lots and lots of good moments can lead to apathy and dissatisfaction (sounds crazy right?? I've seen it happen again and again). I CAN'T be half present with my son. I CAN'T engage him halfheartedly. If I do, he simply checks out. When I'm here, he is too. So he really kind of helps us all to be a little more "in ourselves" a little more present. Does that make sense?

Please, Please, Please, if nothing else, hear this. What a parent prays for is that their child finds peace... in themselves and with their own world. My son doesn't have to be a doctor or a lawyer. But I damn well insist that he find pleasure in his life, work hard and do whatever he chooses well and with grace and perseverance, that he pursue things that he finds fulfilling, and above all that he not despair when he encounters a sometimes difficult and discouraging world. I think it would hurt your parents to know that you are hurting or feel guilty. I know it would hurt me deeply if my son expressed a similar sentiment. Not personally, but because it hurts a parent to know their child is hurting. I truly believe you MUST be a parent to understand this fully.