parents who can't live independently

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Ettina
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23 Jun 2015, 6:22 pm

I'm 26 years old (as of two days ago) and high functioning autistic, but due to executive dysfunction, I can't live independently. I'm working on independent living skills, but I don't know if I'll ever succeed in living on my own, nor am I certain if I want to. I'm also aromantic asexual, so it's unlikely I'll find a partner to live with.

However, I've always dreamed of being a mom. I don't feel that my life would be complete if I never have kids. (Even if my brother has kids, he's made it pretty clear that I would be an aunt rather than another parent, and that's not enough for me.) Plus, everyone in my family agrees that I'd make a really great parent. I've done a lot of research on how to get a kid (adoption, sperm donation, etc), but I've found a lot less information about what I should consider in terms of family arrangements once I have the kid.

Is there anyone here who is a parent while still dependent on family members for daily living? Do you know of anyone in this situation? Do you have any insights to share? (The closest I've found are teen moms, but their pregnancies are typically unplanned.)

I know kids can be raised in all sorts of unconventional family arrangements and turn out fine as long as they get good parenting from whichever parents they have. But it would really help to hear from someone who's been there.



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23 Jun 2015, 10:57 pm

I depend on my husband to help me with my kids. My parents help out too. I don't think I would do it alone.


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ASDMommyASDKid
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24 Jun 2015, 1:50 am

I do not know that I have enough information to answer. Some of it would depend on why you cannot live independently, what help you would need, what help your family is willing to give, and making sure your child/children are set up to be taken care of if you pass before they are independent themselves, especially if you are relying on your parents or others of their generation for help. They may get too old to help you and your children, before they are independent, as well. I am assuming also, that depending on the reproductive choice you make, there will probably be a desire on the part of thee people involved, like adoption agencies for example, to make sure that you have a system in place.

Also, if you know you cannot do this on your own, I think it is only fair to give veto power to anyone whose help you would be relying on. You want to make sure they want this responsibility as much as you do. (I am guessing you have this already, but I put this out there, just in case) I say this b/c as much as a love my son, I would not want my son to make the choice to have kids that he and/or a partner could not take care of without our help.

Edited to add: I know you said your issues are executive functioning ones, but there are degrees of disability, and so to clarify what I mean when I ask how it affects you, I guess I mean which parenting duties could you not do.



Ettina
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25 Jun 2015, 7:31 pm

ASDMommyASDKid wrote:
Edited to add: I know you said your issues are executive functioning ones, but there are degrees of disability, and so to clarify what I mean when I ask how it affects you, I guess I mean which parenting duties could you not do.


It's not so much parenting duties as general 'running a household' duties. Keeping the house clean, paying bills regularly, doing laundry/dishes/etc, that sort of thing.

I also don't have a driver's license, so I would need help with transportation. I find taking the bus requires a lot of concentration to avoid missing my stop, so I'm not sure I could do it if I was distracted by a child.

I can dress kids, change diapers, bathe kids, feed them, play with them, etc. I don't think I could keep to a schedule, but I think feeding etc on demand is probably better for kids anyway. I might need help with appointments & finding daycares & schools though.



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26 Jun 2015, 1:42 pm

Is it possible to find another aromantic person to have a pragmatic relationship with as a pair of parents?

There is a heck of a lot of parenting that is specifically about executive functioning, and as you've noted, just having a kid around tends to strain your ability - DH and I struggle with that constantly, both having deficits in that area - but at least we have a good partnership. You'd basically be asking your caregiver to be a second full-time parent. If they're OK with that, it's something to think about.

For instance, I had not realized until I had my own just how much scheduling and transportation is involved - shuttling kids to and from appointments and schools and to their friends' and making sure they are on time getting where they need to go. Or how much it is your responsibility to keep on top of your kid's schoolwork. My kid is a teenager and is able to do all the things you've said you can do on his own, but I still have to do all the other stuff, and it's still a full-time job.

All that said, we have a supported living facility at the end of my block, and there is a family where both the parents have some kind of non-physical disability - and their daughter is doing fine. I am guessing that both of them are working hard to be good parents; I know the Dad is a member of the PTA and comes to school functions with his daughter (I don't think he works outside the home, not sure about the Mom)



Ettina
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26 Jun 2015, 7:08 pm

momsparky wrote:
Is it possible to find another aromantic person to have a pragmatic relationship with as a pair of parents?


I'd love to, but I haven't met any. I know there's an online site kind of like OKCupid but for asexuals, but I'm terrified of meeting someone online.

momsparky wrote:
There is a heck of a lot of parenting that is specifically about executive functioning, and as you've noted, just having a kid around tends to strain your ability - DH and I struggle with that constantly, both having deficits in that area - but at least we have a good partnership. You'd basically be asking your caregiver to be a second full-time parent. If they're OK with that, it's something to think about.


I'm pretty sure my Mom is. But whether she'll still be willing (or able) in the future is not certain. If I get pregnant in the next few years, my parents will be in their 70s when my kid is full grown. I hope they'll still be in good health, but at that age, there's no guarantees.

momsparky wrote:
For instance, I had not realized until I had my own just how much scheduling and transportation is involved - shuttling kids to and from appointments and schools and to their friends' and making sure they are on time getting where they need to go. Or how much it is your responsibility to keep on top of your kid's schoolwork. My kid is a teenager and is able to do all the things you've said you can do on his own, but I still have to do all the other stuff, and it's still a full-time job.


With that stuff, even a few years ago I'd have said I couldn't do it, but I may be able to now. I've gotten an iPhone with a scheduler app, and it's made a huge difference. I've been keeping appointments a lot more easily, and I've even been studying Japanese regularly using a bunch of Japanese learning apps. So I'd probably put some apps related to my kid's school subjects on my phone and set a reminder to prompt them to use the apps with me regularly. As they get older I'd get them a phone and teach them to schedule themselves with it. Or maybe I'll homeschool, if I'm not desperate for 8-hour breaks in the daytime by then!

Transportation is still an issue. Hopefully I'll get my license soon. If not, I'll have to arrange for someone to shuttle me around, or get better with buses. However, once the kid is getting to school age, I can probably train them to watch for their stop with me instead of distracting me. (I know my little brother could've done that when he was in elementary school.)

momsparky wrote:
All that said, we have a supported living facility at the end of my block, and there is a family where both the parents have some kind of non-physical disability - and their daughter is doing fine. I am guessing that both of them are working hard to be good parents; I know the Dad is a member of the PTA and comes to school functions with his daughter (I don't think he works outside the home, not sure about the Mom)


Hmm, that's a thought. I'm leery of supported living facilities because I've heard horror stories, plus I'm not sure there are any for an autistic person with normal IQ in my area. But I could take a look at what's available.



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26 Jun 2015, 9:39 pm

I think you do need to have the basics of independent living, including driving, before you become a parent. I think you need to learn to live independently and run your own household before having a child. Other people like your parents can still help out, of course. One thing I don't understand is if you can dress kids/bathe kids/feed kids/change diapers, then why can't you clean the house and do the laundry/dishes?


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Ettina
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27 Jun 2015, 7:05 am

btbnnyr wrote:
One thing I don't understand is if you can dress kids/bathe kids/feed kids/change diapers, then why can't you clean the house and do the laundry/dishes?


I can do laundry and dishes when I decide to do it. It's remembering to do it regularly that's a problem. Kids complain about hunger if not fed, and stink if they need to be cleaned or changed, so there are built-in reminders.

As for cleaning, I'm a bit freaked out by messes, especially if they aren't easily 'contained' in one spot. (A diaper is fine, because it's all in the diaper. Peeing or pooping on the floor would stress me out, and I may or may not be able to clean it up depending on where it is and how stressed I am.)



Ettina
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27 Jun 2015, 7:12 am

btbnnyr wrote:
I think you do need to have the basics of independent living, including driving, before you become a parent. I think you need to learn to live independently and run your own household before having a child.


My Mom doesn't have a license. Plenty of parents don't have driver's licenses.

Plus, what if I never get those skills? I need to be a parent. I don't know how to explain it, but when I imagine living out the rest of my life without ever having a child, it just seems so incomplete and sad. I just can't stand that thought.



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27 Jun 2015, 9:38 am

Ettina wrote:
Plus, what if I never get those skills? I need to be a parent. I don't know how to explain it, but when I imagine living out the rest of my life without ever having a child, it just seems so incomplete and sad. I just can't stand that thought.


Ettina, I think lots of people with lots of disabilities can be parents. That said, this statement worries me, because the first thing you find out about parenthood is that it isn't about you or how you see yourself.

I love my kid to bits and would do it again in a heartbeat (actually, I kind of wish I could do it again, without making the same mistakes) That doesn mean that parenting hasn't been incredibly lonely and isolating, an incredible amount of drudgery that I not only found difficult but had to drag myself through, and has involved exactly nothing that I thought it would. Parenthood involves constantly feeling left out and left behind and that you have to do all the cleaning up and can have none of the fun: it's kind of like being a waiter or a maid in an awful lot of ways.

This is from someone who worked daycare all through high school and college in preparation for being a parent, and who also was a pet owner for "practice" being a parent...I really, really like kids and I not only wanted my own, I wanted to be the best parent possible. One of the most frustrating things about parenthood is that it doesn't go the way you think. Period. The ONLY take-away from all my years of child care was that I had learned how to sit with a colicky baby screaming in my ears for hours at a stretch (I am grateful for that child every day! Would not have made it without her) Everything else was like being on a 24-hour-7-day ride I couldn't control, and worse - I have a LOT of regrets about mistakes I've made (which is a large part of parenting also.)

I am glad I am a parent and like I said, I'd go back and do it again: but if I had to do it again, I'd have put myself in a much stronger position financially and emotionally and have really worked much harder on all those social and executive functioning skills, because having to come up with those skills on the fly was really. really. hard.

I think the people who are disabled and are good parents have spent time having a long and hard look at their disabilities and have a specific plan on how they are going to compensate for each one. That might look like listing and assigning tasks to someone else, but more likely looks like working to develop skills until you have them yourself.



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27 Jun 2015, 9:55 am

The other thing is, you can't really wait until you see a sign your kid needs something. Some kids are very docile and won't complain unless they are in dire need of whatever it is. There are times when you have to be proactive. if you have a child with failure to thrive issues or anything like that, you will have to be sure they get a fed at least a certain amount and regular intervals. It might be good practice to put yourself on a visual schedule or try have some kind of system in place for your own tasks---and that can help you with future baby-related stuff too.

I am also organizationally-challenged---so I can say it does take concentration for me to stay on track.



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27 Jun 2015, 6:56 pm

Ettina wrote:
btbnnyr wrote:
One thing I don't understand is if you can dress kids/bathe kids/feed kids/change diapers, then why can't you clean the house and do the laundry/dishes?


I can do laundry and dishes when I decide to do it. It's remembering to do it regularly that's a problem. Kids complain about hunger if not fed, and stink if they need to be cleaned or changed, so there are built-in reminders.


I wouldn't count on that. My daughter was probably 4 before she ever complained of not being fed. And my son's diaper could be bursting without a peep. By the time you smell urine, it is way too late to be changing a diaper.

I agree with btbnnyr...I would work on figuring out how to clean the house and do the laundry/dishes before considering having/getting a kid. Being a parent involves a lot more than dressing, feeding, bathing, and playing with kids. In fact, those are the easy parts. It's the combination of all of that, on top of everything else (including self care), AND the fact that you have to do it whether or not you are up to it that makes it hard. I am not trying to be discouraging, only realistic. You don't get a break. You have to do things. Sometimes you have to do things, like clean up vomit and feces, that is utterly disgusting. Sometimes you get no sleep at all, and you still have to get up in the morning and take care of your kid. You would need to be more than "pretty sure" that your mom was up to this, because it really wouldn't be fair to take on only the parts that you are "good" at, or that you feel up to, and then leave the hardest/worst parts of parenting up to your mom. The hardest/worst parts are still parts of parenting. And being a good parent involves the whole gamut.

I can tell you one thing...I was not ready for parenting at 26. At all. I got pregnant with my son when I was 34. I think the earliest I could have possibly had kids and been any good at it was probably 31 or 32. It's OK if you are not ready yet. But since you know this is something you are interested in, maybe you could postpone it a bit and build some skills in the meantime.

Have you ever had a puppy? They can be quite demanding in the beginning, and proper training means you have to do things when you don't feel like it. Could you start with something like that? Maybe even foster rescues if you like animals?


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27 Jun 2015, 7:05 pm

Ettina wrote:
btbnnyr wrote:
I think you do need to have the basics of independent living, including driving, before you become a parent. I think you need to learn to live independently and run your own household before having a child.


My Mom doesn't have a license. Plenty of parents don't have driver's licenses.

Plus, what if I never get those skills? I need to be a parent. I don't know how to explain it, but when I imagine living out the rest of my life without ever having a child, it just seems so incomplete and sad. I just can't stand that thought.


Again, not trying to be discouraging, but rather realistic.

If you can't stand that thought, then you need to work really hard on getting the skills you need to be able to take care of a child. I have EF problems myself. So I get that it's not easy. But you have to figure it out, because right now you are only responsible for you. Once you have a kid, you are responsible for you AND someone else. That is not something to take lightly, and I'm sure you already know that or else you wouldn't be asking the questions you are asking. There are plenty of people out there who have kids who are really not ready to be parents. The results are almost always sad.

That is not to say you need to be perfect. I'm not perfect. I still have struggles. But I have built in some routines that help and stretched myself way past my comfort zone or what comes "naturally" to me. I would not say I am a perfect parent, and sometimes I think I am not even a "good" parent in traditional terms. But as a whole, I am raising healthy, happy, thriving kids, so I must be doing something right, even though it may not look the same as how other mothers do it.


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27 Jun 2015, 9:31 pm

InThisTogether wrote:
I can tell you one thing...I was not ready for parenting at 26. At all. I got pregnant with my son when I was 34. I think the earliest I could have possibly had kids and been any good at it was probably 31 or 32. It's OK if you are not ready yet. But since you know this is something you are interested in, maybe you could postpone it a bit and build some skills in the meantime.


This is a very good point; I did not become a parent until I was in my thirties as well. As someone who is definitely BAP and probably has AS - giving yourself time to catch up developmentally is important. I was living independantly when I was 26, but my finances, health, and housekeeping were a disaster - I was just barely getting by (I was, at least, able to work, even though I did screw it up all the time.)

Something else to consider with your parents - probably after successfully learning to take care of a pet - there is a real, serious need for foster parents. That is a temporary situation, if your parents agree to help you, you won't have to be concerned about them becoming too old to help you parent. There is also a screening and educational process that should help you find out if you have the skills you need to be a parent.



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27 Jun 2015, 10:06 pm

InThisTogether wrote:
Have you ever had a puppy? They can be quite demanding in the beginning, and proper training means you have to do things when you don't feel like it. Could you start with something like that? Maybe even foster rescues if you like animals?


I have a puppy right now. It's been an adjustment, but not more than I can handle. I think maybe I'm not communicating my abilities and difficulties very clearly, because you seem to be expecting me to have issues I'm not likely to have. But I don't know how to explain it better.

I mean, I've cleaned up dog poop and dog diarrhea. I didn't enjoy it, but I did it. I went with very little sleep for the first while until the puppy got used to her kennel, and I coped. I hate going for walks now that the weather's gotten so warm, but I do it because my puppy needs exercise. (I can tell when she needs exercise because she gets hyperactive and has trouble listening when I give her commands.) Also, my puppy only gives very subtle signals that she needs to go outside, but most of the time I catch it. (Or did before she got her stomach flu, at least.)

I don't see how being able to live independently is at all linked with parenting skills (apart from deciding if you live alone or with someone else). Can you point to precisely what skills you think are linked, and why? I mean, to me, feeding & changing diapers is totally different from doing dishes or laundry. I could change my brother's diaper when I was 10 (he was 2), but only learnt how to do laundry in my 20s - and I found it pretty tough to learn.

I'm getting really discouraged. You talk about the 'other stuff' involved in being a parent, but you don't explain what that is. How am I supposed to know if I can do it or work on learning it if you don't say what it is?



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27 Jun 2015, 10:34 pm

Other "Parts" of parenting:

Providing a clean safe environment: This involves making sure your house is clean, looking out for various hazards (becomes more important the more mobile they become), making sure utility bills are paid on time so that you do not lose heat, electricity, etc.

Providing proper nutrition: This involves being able to meal plan to some degree, knowing how to prepare food, knowing how to store food properly to prevent food borne illnesses, grocery shopping, etc.

Keeping on top of multiple medical appointments: Babyhood is filled with "well baby check ups" where the doctor monitors growth and development, gives vaccinations, etc. Then there are dental and vision trips. If your kid has any special needs, the requirements go up dramatically. From 22 months to 5 years old, my daughter had 20 hours of services every week. Keeping on top of all of that was like a job in and of itself, and then I still had to do the feeding, the bathing, the playing, and the above on top of that.

Once school starts, parent-teacher conferences, keeping on top of homework, school projects, after school activities, etc.

Socialization: There will be play dates, birthday parties, hosting parties, and a whole bunch of other required social interactions (this is probably one of the most dreaded parts of parenting for me). There may be dance lessons, sports teams, martial arts lessons, or any other variety of things that kids get involved in that have requirements of parents, too. Like sitting through a day long tae kwon do tournament with a bunch of strangers who you are "expected" to interact with in a loud, uncomfortable enviornment.

Then there are the behavioral issues when your kid is not doing what you want them to do, and you have to be able to figure out how to handle it, which is more difficult when you have your own atypical wiring to deal with. Now that I have one kid in puberty and one in pre-puberty, there are additional things to deal with. Hygiene issues. Emotional outbursts. Changing social pressures at school. Bullying. Being outcast. Having fights with your friends. Feeling hurt because someone you like doesn't like you.

I don't think anyone means to discourage you. But being a parent simply isn't as simple as feeding, bathing, changing diapers, and playing with. To be honest, I don't think anyone understands exactly what they are getting into when they get into it. And I think it is overwhelming to pretty much everyone. But housekeeping and laundry are rather rudimentary skills when compared to what you will need to be able to do when you are a parent. They do not stay babies forever. They become increasingly complex and challenging as they grow. Granted, your skills as a parent grow as their demands grow.

My point is, it might be wise to slow down a bit and gain some independence skills before deciding to become responsible for a tiny human. It's a complicated thing to do, and I'm sure I missed a lot in what I wrote above.


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